Wednesday, December 22, 2010

1 year report - Continuing Cure Status

Tempus Fugit!

How time flies when you're cured of the progression of MS and can live your life without the distraction of neurologic worsening. Life's great! Perhaps not always perfect, but I am an optimist. At this same time last year I was in the Heidelberg University Hospital receiving chemotherapy to ablate & reset my immune system followed by my stem cell infusion "birthday" that marked the transition to being cured of MS disease activity. It's difficult not to think of this momentus day in my life (December 29, 2009, stem cell transplant bithday) that I can now derive so much happiness & satisfaction (click to enlarge):

So it's now 12 months post-stem cell transplantation for me and closing fast on Christmas. So I hope everyone reading these words will at least hear from me that I sincerely hope you have some wonderful December and New Year holidays. Being in the Ackermann ward at Heidelberg University Hospital receiving chemotherapy to ablate my immune system as conditioning regimen prior to receiving my own hematopoietic stem cells back to re-boot my immune system enabled me to be successfully cured of MS. On December 29, 2009 I was fortunate enough to get my "new & improved" immune system re-installed in the form of my own adult hematopoietic stem cells that made this a reality. Although I have to admit as important as this event is in my life, emotionally I'm starting to forget one year later exactly what that chemo experience was like. Funny, but I no longer remember it being especially unpleasant because it is completely overshadowed by the stopping & reversing of my MS disease and associated symptoms. I'm glad I had the opportunity to document my experience in this blog so I can go back and periodically read through it to remind myself of the scientific miracle of the procedure that cured me of the progression of Multiple Sclerosis.

And now that it's been a whole year since my transplant, based upon my current condition I'm doing fantastically well on many fronts that I will explain in more detail. But before that I think back to mid-2009 when I was researching how best to recieve a hematopoietic stem cell transplant (HSCT) to treat my MS. At that time I was several years into a secondary progressive (SPMS) disease phase with only symptomatic worsening as time passed and at that time (but no longer) headed for the eventuality of being in a wheelchair. A very disconcerning time in my life that really energized me to take control of my disease. At that time all I wanted to do was to "stop" the progression of my disease and to dodge the bullet of worsening MS symptoms. I can now confidently say that I beat MS, and not the other way around.

Before I get ahead of myself, let me first explain a little about what is currently going on with me. Virtually all myeloablative HSCT recipients such as myself lose all T- and B-lymphocytes after chemotherapy conditioning (the objective of the treatment), losing immune memory accumulated through a lifetime of exposure to infectious agents, environmental antigens and vaccines. This "loss of immune memory" phenomenon (immune system becoming "antigen naive") is the biggest part of the overall equation as to why HSCT stops the body's damaging autoreactivity to restore immune self-tolerance resulting in a halting of further underlying MS disease activity & progression. So I received my first round of (re)immunizations this past November 7, 2010 [and the second round on December 28, 2010] which is required following myeloablative HSCT because the transplant makes the body "forget" the intersecting confusion of who is the enemy (diseases) and who is the self (nerve tissue), and is also why this treatment cures MS. Boy my arms were sore for two days following those vaccinations! Six (IM) shots at one time is a record for me, and will remain so until two years post-transplant (one year from now) when I will receive seven shots at one time. The good news is that other than the soreness in my arms, I have experienced no other side effects associated with the vaccinations. (Perhaps next time I will ask for a few of the vaccinations to be administered in my thigh muscles so as to spread around the injected vaccination serum.) But at least I've now started the process to catch up with my three-and-a-half-yeard old son on becoming adequately immunized against dangerous communicable diseases. Here a list of the CDC/NIH-recommended post-transplant vaccination schedule that I am following (click to enlarge):

Also a note about getting sick following my immune system "reset". . . . . since losing (and then re-installing/re-growing) my bone marrow to correct (stop, actually) the defective memory & damaging autoreactivity of my immune system, I got sick for the first time in early December. I caught a strong & nasty cold that was going around in the community in the earlier part of the month. My wife, son and many friends all got the same cold. But my being sick and reaction to having this cold was the same as any normal individual and I suffered no more than any normal person in the community. This tells me that now at one year post-transplant my immune system is primarily back to normal and I'm no longer afraid of doing any normal activity that might sicken me. That includes being around children, animals and crowds. I'm no longer afraid to shake people's hands or touch surfaces (door knobs & hand rails) exposed to the public. And once I complete my vaccinations at two years then I will definitely be back to 100% just as any other ordinary healthy citizen. Booyah!

And as you read this I'm sure it is obvious that I am quite enthusiastic about HSCT as a cure for MS. But this doesn't make it any less of a real curative treatment because its currently the ONLY curative treatment available today for MS that has & continues to be scientifically demonstrated. To state it openly, honestly and truthfully, I am still saddled with a significant portion of residual symptomatic deficit that had accumulted prior to my HSCT. With that said I also have to add that HSCT has not only met my expectation as a cure, but also exceeded my hopes of the treatment. My MS disease progression has completely stopped (with absolutely no new or further progression of my disease since my transplant) and I also have been experiencing a continuous slow & gradual reversing of my existing symptoms that had accumulated prior to my transplant. So basically, the trajectory of my health definitely continues upward that so far includes only improvement, no worsening. So here is a list of the symptoms I had at the time of my HSCT one year ago, along with a brief follow-up desciption of my current status.

Current post-treatment MS status following stem cell transplantation

First note: Since my transplant I have had absolutely no progression of any symptoms of any type from MS. So there has been absolutely no worsening. My personal definition of a "cure." And this is all while I have stopped taking all drugs to treat my MS. After 15 years of use, the last time I had taken the interferon immunomodulator Avonex was November, 2009 (to allow a short washout period before my transplant).

However, exactly as expected I still have some residual deficit for some of my symptoms that had accumulated for the several years prior to my transplant. Here is a list of my current clinical symptomatic descriptions & status:

  • Sensitivity to heat - Completely resolved - This was one of my early symptoms that completely improved and dissappeared. For years I could not stand the heat and I never felt cold, even in near-freezing weather. Prior to my transplant I could only tolerate lukewarm showers. Since my return from Germany I now love taking hot showers. And just like normal people without MS, on a cold day I feel cold. (I now wear warm jackets that I haven't worn in years.) I also am no longer afraid to venture outside with physical activity on a warm summer day. Now I can handle the heat and I now respond to temperature variations like I did before being diagnosed with MS in 1995.

  • Bi-lateral leg parathesia - Completely resolved while at rest - This was also one of my first symptoms to dissappear. For ten years prior to my transplant my lower legs never stopped tingling from the parasthesia. This used to be a 24/7 effect no matter where I was or what I was doing. However, now I no longer feel it under normal resting circumstances. Currently sometimes I do get some lower leg parasthesia following an arduous and / or physically demanding & stressful trek but resolves soon after a short rest.

  • Vertigo - Completely resolved - Although not a frequent occurence, at random times I would experience the room "spinning" (previously would usually happen at least once a week, and occasionally more often when I tilted my head far backwards). This has not happened at all, not even a single occurence since returning from Germany following my transplant.

  • Lhermitte's sign (and ocular "flashes" due to eye movement) - Completely resolved - Although it did not happen often, I did occasionally experience this phenomenon. It hasn't happened at all since my transplant and return from Germany.

  • Resting fatigue - Completely resolved - I know this symptomatic description sounds like an oxymoron. How can one feel fatigue while resting? And that is part of the insideous nature of MS. Often while just sitting and doing nothing but watching TV while sitting on the couch my body would feel exhausted like I just finished a ten mile uphill run. I hated this phenomenon because I could do nothing to escape the effect or do anything to not feel physically fatigued. But following the transplant procedure I no longer experience this type of fatigue onset. I still get fatigued when doing physically stressful things such as a very long walk, but never does it occur when I have done nothing stressful to provoke this unwarranted effect. A major improvement to the enjoyment of my daily life.

  • General fatigue - Substantially improved - My general fatigue level (especially while doing activities with physical exertion) is substantially reduced & improved. I don't know how to quantify this improvement, so I just have to provide a qualitative description. I simply don't tire and feel fatigued as much as compared with the time prior to the transplant. Another improvement that allows me better enjoyment of my life on a daily basis.

  • Ataxia / balance - "Mostly" resolved - At least now I can walk without looking like I'm drunk all the time, which was a problem before the transplant. I estimate that to date these associated symptoms have improved approximately 70-80%.

  • Hand sensory deficit & weakness - better than 75% improvement - I'm right-handed and for about three years before the transplant the weakness in my hand(s) prevented legible writing and so I never communicated by the printed word except by using a computer keyboard. Now I can write again with pen & paper. It's nice to personally write my greeting card messages this year.

  • Foot sensory (feeling) deficit - Mostly still with me - My feet have been about 75-80% numb for a long time. This prevents me from balancing on one foot. Currently the numbness feeling is very slowly improving. Not fast reversal, but I can definitely notice the slight improvement. I'll report on this again over a longer period of time. I suspect the slow improvement will continue for several years.

  • Leg weakness - This is still my main symptomatic complaint that makes up the bulk of my evident MS symptoms. Although my leg weakness (especially after longer walks or physical exertion) has gotten better following my transplant, I have noticed the slowest improvement in this area of deficit. The good news is that I can walk further and stand for a longer time than before treatment without stopping & sitting to rest. So there has been improvement but it is to a much lesser degree than all of my other pre-existing symptoms. Again, I expect to see continued very gradual symptomatic deficit improvement over the next several years. I will report again as things change (or not) over time.

  • [Someone else told me that probably the reason these last two symptoms are the slowest to improve is because the nerves to these areas (legs + feet) have to travel the entire length of the spinal collumn and have been subject to the maximal MS damage over this extended length and hence will take a longer time for the body to repair/compensate for the existing damage. I don't know if this is actually correct but it seems to make pluasible sense to me.]

  • EDSS score - 1 point improvement (so far) - Immediately prior to my HSCT I was at an EDSS of 3.5. Now one year post transplant I am an EDSS of 2.5. So I have now fallen into the category which neurologists consider "significant improvement" of my disease status (an EDSS improvement of >1.0). This still amazes me because people with SPMS (was me) virtually never see any improvement at all, EVER! Furthermore, the HSCT studies to date indicate that symptomatic improvement following HSCT continues for several years following the transplant. I'm now within striking distance of acheiving my goal of being EDSS of 1.5 (or better) within the next couple of years. No gaurantees. But if I were a betting man I'd say that it is likely. Here is a short video of Dr. Richard Burt explaining this phenomenon:

Also an important note regarding permanent side effects of this chemo conditioning regimen specific to my treatment which is a BEAM protocol (this will not necessarily apply to all stem cell transplantation conditioning regimens, but likely does for myeloablative protocols). . .

This treatment is likely to cause irreversable sterility in most individuals. So if someone wants to have a child following the treatment then they will need to plan ahead. Expecting this I planned ahead and banked my sperm for the future possibility that my wife and I will have another child. This is obviously an easier problem for a man to overcome. For a woman wishing to become pregnant following myeloablative HSCT would almost certainly require an IVF procedure using her own banked eggs, her own preserved embyos or a doner egg. The good news is that although becoming pregnant is more of a hurdle for a woman following HSCT, being pregnant is not. Following HSCT there shouldn't be any added difficulty with having a normal pregnancy and bring a normal baby to term.

For women it is possible (although not definite) that they will experience amenorrhea which may, or may not be permanent. The risk of early menopause is greater with older female patients receiving the HSCT procedure. Just a possibility to keep in mind.

I did experience a single unexpected (and uncommon) side effect from the chemo exposure that may be permanent for me. It appears that my leydig (testosterone-producing) cells were severly affected by the BEAM chemo regimen and my body lost most of it's ability to produce testosterone. However, this turned out to not be a big problem to overcome since I can easily use a transdermal testosterone skin patch to bring my body's testosterone levels back up into the normal range. This treatment doesn't bother me at all and I still consider it a more-than-equitable trade off for curing my MS. I much prefer wearing a skin patch compared to self injecting interferon MS medication that is no longer required. I'm satisfied & happy with this trade-off.

So to summarize. . . . other people also have been cured of MS via HSCT. And amazingly this MS cure flies in the face of the statements coming from many learned-people that "there is no cure for MS." Wrong! There is a cure for MS. Only one as of today, and it's called "Hematopoietic Stem Cell Transplantation" (HSCT) that is based upon solid curative science. You can check out my references page if you want to understand more about the well-established curative & clinical science behind HSCT for MS:

I'd also like to mention that I am fortunate to have met several other people that have also received the (same protocol, different treatment facility) transplant regimen that I received. One of these individuals is the very good-natured Dave Bexfield that founded "ActiveMSer's" website:


Since completing his HSCT, Dave has put together a nicely-made video that summarizes his experience with both entering the HALT-MS clinical trial, and his treatment experience:

Here is another person (Chris) that just completed HSCT for treatment of his MS in Ottawa, Canada. We don't actually yet know the final end-story (I'm confident he will be cured), but you can follow along with his story (primarily narrated by his wonderful & devoted wife, Erin). . . .

My End to MS - Chris' journey to end his multiple sclerosis by undergoing a hematopoietic stem cell transplantation at the Ottawa General Hosptial. . . . .

And here is an intelligent, strong-willed woman that also came to the conclusion that HSCT was likely the only medical treatment that had a chance to stop the progression of her of MS, and received treatment with Dr. Burt at NWU. Not only can you read all about her transplantation experience, but also if you ever wanted an opportunity to feel good about yourself by helping another person, this may be it. . . .

Lisa's Hope

So together with dozens of other people that have undergone an HSCT procedure for treatment of their MS, I am living proof that MS can be cured. I will concede to you that I have my own definition & nomenclature of a cure that you may not agree with. . . . A cure to me for my MS has always been the same; A "stopping" or "halting" of MS disease progression. So by my own definition I am cured. But that isn't the end of the story regarding my disease status. I have additionally been experiencing a slow, but definite & substantial "reversal" (improvement) of all my existing MS symptoms that had accumulated over time prior to my undergoing HSCT. I will admit & fully disclose to you. . . . . this process of symptomatic reversal is occuring very slowly for me. However, keep in mind that I had Secondary Progressive MS (SPMS) in which the underlying nerve damage mechanism is different as compared to those MS patients that have the relapsing form of MS (RRMS). It turns out that people with early phase RRMS disease status that undergo HSCT to cure thier MS usually experience not only essentially 100% halting of their disease progression, but also have better than an 80% chance of experiencing substantial & perhaps quick reversing/improvement of existing physical deficit. So for me personally I have been experiencing a very slow, but welcome modest improvement even though it is not likely to ever be as good as someone treated with HSCT while still RRMS. I describe the nature of symptomatic "improvement" in a Youtube video I listed on my six month blog posting when it became apparent to me that I had experienced stopping+reversal of my MS symptoms, along with a description of the mechanistic actions of HSCT on MS symptoms:

So although likely that the progression of MS disease activity will be stopped in all forms of MS (both relapsing and progressive), I have created a graphical slide to categorize the expected relative probability of symptomatic improvement (damage reversal) following hematopoietic stem cell transplantation vs. disease status at time of treatment (click to enlarge):

As a wrap-up of this posting I mention for scientific reference and curiosity. . . . . In my 6 month post I said that I would try to find an example of a hematopoietic stem cell transplant procedure that did NOT work on a specific individual to cure their MS. I still have not been able to find an individual that fits such criteria. (So far, I have only found succeses with HSCT to cure MS.) But I did find some info toward that direction. . . . a brief well-written blog of Craig Garrison that had the procedure performed in 2001 that may be of interest. (My hat's off to him for sharing this valuable information from way back at the begining of MS curative history as-performed in the United States under clinical trial.) He was one of the very first set of US-based phase I clinical trial patients to undergo an intial "prototype" stem cell transplantation procedure (which has since been refined & updated (changed-protocol) to make it safer without losing curative efficacy). And although he indicates overall he is satisfied with having undergone the procedure, there is no doubt (by reading his blog) that he had a very rough time with the experience (both during, and especially after the treatment) with unpleasant and troubling treatment complications (CMV infection and treatable skin cancer lesion, both of which he was able to eventually overcome). But in retrospect, knowing now what the researches did not know back then, its understood why this likely happened to Craig and how it is being better-dealt with now with the evolved protocol. A couple important reasons why he had such a difficult experience. (I had the good fortune to communicate with Craig via e-mail and he indicated that my understanding here is consistent with his thinking). . . .

Number #1 is that Craig's bone marrow ablative treatment protocol included total body irradiation (TBI) that is sometimes used with some forms of aggressive-cancer patients receiving a stem cell (bone marrow) transplant. I can only guess that the original researchers at the time wanted to be absolutely certain that they fully and completely killed the immune system with little remaining doubt, even though TBI is rather damaging to the body's other tissues where destruction is not desired. It is now known (starting in the phase II MS stem cell transplant studies) that a chemical-only ablation regimen works just as well as an MS cure as compared to a protocol that includes TBI, with significantly less risk of unwanted complications experienced from unecessary ionizing radiation exposure. I "think" his most serious complications that Craig experienced were directly related to the TBI, which is now known to not be required while still effecting a cure for MS.

Number #2 issue is that Craig had SPMS with an advanced EDSS score of 6.0, meaning that he was on the immediate threshold of being unable to walk (he used a double-cane to move around). Nearly all the early phase I study participants had a significantly advanced stage of MS (most with EDSS in the range of 6.0 to 8.0) and were not ambulatory, which is now known to be less curable (or reversible) as compared to ealy RRMS disease status with a lower EDSS. That is, although counterintuitive, people with more advanced MS disease status don't fair as well as people that receive a stem cell transplant cure while treated earlier in the MS disease cycle in which they are still RRMS and/or ambulatory. So this means late stage progressive disease + high EDSS (low ambulation capability) = poorer chance to reverse disease disability, although it does look like the disease progression can still be "stopped" in such advanced cases. But by that time much of the neurologic damage is already done and it may not reverse much, if at all.

For me, although I was SPMS I am fortunate to have had a relatively lower EDSS score (3.5). So in my case being fully ambulatory portended a better chance of cure and disease reversal, both of which I have realized. So for me, my status has resulted in better-than-cure with continuing reversal of disability. This clearly indicates that although perhaps not obvious, anyone else considering this treatment would be wise to complete stem cell transplantation treatment earlier, rather than later in their disease lifecycle. Doing so significantly ups the probability of curative success and more complete reversal of disease symptoms.

Craig's (rather dated, but still historically-relevant) 2001 stem cell transplant blog:

In Craig's own words back in 2003 that indicates at least his disease completely stopped progressing. . .

The 18-month check-up went well. The MRI showed my brain was stable., i.e., no new lesions, no active lesions. The timed physical trials showed that my legs improved again, and I can now walk twice as fast as when I went into the trial, but my hands were unchanged from six months ago. I had sensed that my rate of improvement was slowing, but it is still improvement. The more subjective trials like the finger to nose to finger test seemed to show some improvement. My guess is that means my brain has a better sense of where the unseen parts of me are than it did six months ago. Howwever, I will say that when I wake up in the middle of the night and need to scratch an itch on my nose, it is still trial and error before my finger finds my nose.

And thanks to both David Ferris and Dave Bexfield for bringing my attention to Craig Garrison's recent (Jan, 2010 & Apr, 2010) updates to know how he is doing nearly ten years following his HSCT treatment in which he has basically remained MS-progression-free for this past decade, and continues to be. A very good & positive sign for those wishing to also pursue HSCT to cure their MS. But I don't want to steal Craig's thunder. Here he briefly summarizes in his own words. . . . .

. . . . . My [HSCT treatment] results weren't so dramatic, but they were definitely positive. Most who go through this procedure simply go into remission. I've worked hard for [the past] eight years, and have gone from occasionaly needing two canes to occasionally needing no cane for short periods.

The procedure is getting a little more press now because the phase II trials are starting to report [very positive] results. . . . . .


I applaud you Craig. Thanks for being the true pioneer to help out the rest of us! The only thing that I can claim fame for myself is that I beleive I am the first person in the United States to receive HSCT for treatment of my MS outside of a clinical trial. It doesn't bother me that I'm sure this distinction will go unnoticed in the history books. But Craig on the other hand. . . . you truly braved the (then) unknown during your transplant in the quest for a better future. Time to hit the lecture circuit and make some moola from the speaking tour! :-)

And if you'd like to read greater detail as-reported by Craig in April, 2010. . .

So sorry to keep repeating the same thing I've said before, but this is a critical point. . . . . Looking at the global studies to date and building on the experience and knowledge developed so far, it looks like people treated earlier in the MS disease cycle that also have a fully ambulatory EDSS experience essentially 100% halting of thier MS disease activity (my personal definition of a cure). And then on top of that, better than 80% of the same group of people actually experience significant reversal of their MS-related disability and symptoms. In effect, not a single person treated during this earler (ambulatory) MS stage appears to experience symptomatic worsening following hematopoietic stem cell transplantation, but instead have an excellent chance of reversing their existing disease symptoms (if you consider greater than >80% an excellent chance, which I do.) This small population study on early MS-disease cycle patients by Dr Richard Burt at Northwestern University certainly appears to confirm this for replapsing patients. . . .

Scientists Reverse Early MS With Patients' Own Stem Cells

After an average follow-up of three years after receiving their transplants (which took place between January 2003 and February 2005), 17 patients (81 per cent) improved by at least one point on a [EDSS] disability scale. And for all [100%] patients, the disease had stopped progressing.

Also note that no study patients in this clinical trial (or any other HSCT phase II clinical trial for MS) died as a result of this treatment. These safety data together with the curative results indicate that it is most likely to be repeated in the phase III clinical trial that is already in progress. And as I had mentioned previously, I also firmly think that this treatment will become standard FDA-approved curative therapy in the USA no later than sometime between 2020 and 2025. Sorry to say that until then you'll have to pay for it out of your own pocket at a facility willing to perform the procedure (I have found none in the US or Canada outside of a clinical trial). But thank goodness at least it is available as a treatment option today overseas! Once it is approved by the FDA, insurance will cover the cost of the procedure at that time and it will also be available in the United States.

Just FYI. . . . For future postings I plan on updates at six month intervals because at this point I think 3 month intervals is now too frequent. So expect to see my next status update at 18 months post-transplant. If convenient for me I hope to provide additional evidence on video showing my symptomatic improvement.

Last note just for the record. . . . the cure for MS is here now! Don't let anyone convince you otherwise.

Thursday, October 21, 2010

10 month Report - Meeting my neurologist to confirm the cure

Sorry that I even have to waste time mentioning this but I need to get it out right up front. . . . . I understand that someone has made the absurd accusation that I have started some kind of stem cell business following my return from Germany to capitalize & profit on my now being cured of MS. I'm not sure what would motivate someone to say such a thing or even why such an idea like this came about, but I can assure you that it is 100% BS! I'm just an ordinary person with an ordinary day job that, like many other regular people had the misfortune of getting Multiple Sclerosis (diagnosed in 1995). I'm not a doctor but I am schooled in science (Physics). I did all my own research on the subject of a cure for MS for my own singular benefit and arrived at my own conclusion that hematopoietic stem cell transplantation (HSCT) is the only treatment that had a chance to stop & reverse my MS (both of which has happened. . . you can read the latest installmetns of my blog for the details). However, I am NOT selling any form of treatment and I have NO business or money-interest at all associated with the HSCT that I received. (To avoid even a hint of impropriety you'll notice that I don't even use advertising banners in the blog.) I only share my experience and information so that if anyone else is interested in HSCT to cure their MS they can have the opportunity to know of the information from someone else that has already done it.

Although I do recommend the place that I had the treatment performed because I had such a good experience (Heidelberg University Hospital), it is not necessary to be treated only there. Anyone can go to any other proper medical facility (hospital) around the world willing to do HSCT for an autoimmune disease and have it done based upon their own research. I can't comment on any facility other than the one where I was treated because I've only done this procedure one time and I don't have any plans to repeat it. So don't think that I'm selling anything. I have nothing for you except free information (only if you want it) and my best wishes. Good luck to you.

Onto something with substance. . . . .

Yesterday I met with my neurologist (Dr. Brian Lee) for the first time since early last year (before my HSCT). Interesting cooincidence is that unknowingly both Dr. Lee and I attended the University of California at San Diego (UCSD). As a fellow alumnus, he is a very good doctor and a very good-natured human being. I've always enjoyed meeting with him and this time is no exception. Although he did not previously outright endorse my endeavor to seek a HSCT as a treatment for my MS, I understand why. Doing so would put Kaiser (my medical provider and his employer) on the hook for paying for the (expensive) procedure. And that is simply not in the purvue of Dr. Lee's mandated responsibilities. Doing so would probably have gotten him fired. But other than an outright endorsement that he could not provide, he has been supportive in other ways. Including of which he and I are now working together to document (through clinical evaluations and MRI scans) the clinical result of HSCT on my MS. So today I had an MRI so that we can use it as a baseline for future MRI's that can be compared to see if there is a measureable effect (lack of disease progression) over time. But based upon the interval of our last physical exam before my HSCT procedure (over a year ago) vs. yesterday, Dr. Lee has established that I have had "no physically-evident progression" of my MS disease over the past year (which is consistent with my own experience and virtually never heard of in SP cases like mine). As a necessarily-conservative doctor I don't expect Dr. Lee to use the word "cure" anytime soon. However, I think that once we're able to compare MRI's over time he'll probably use the medically-accepted term "remission." Yesterday in Dr. Lee's office (click to enlarge). . . . .

And here is note from Dr. Lee confirming that my MS appears (and actually is) stopped. A remarkable accomplishment for someone that was previously SPMS with a continuously-worsening MS disease status. (click to enlarge):

I plan to next post at 1 year post-transplant just a few months from now. See you then!

Friday, September 10, 2010

9 month report - I'm still cured + immunizations

Yes, the stem transplant I received nine months ago still 100% qualifies as a cure for my multiple sclerosis. No equivocations here. As a foreword, I just want to post a informational news article from the United Kingdom's National Health Service regarding hematopoietic stem cell transplantation to remind everyone that this is not snake oil but is a real MS treatment with real curative clinical results based on real science. (This article outlines Dr. Burt's MIST lymphoablative treatment protocol, but the Fred Hutchinson Cancer Institute's HALT-MS myeloablative protocol (same that I received) shows essentially the same curative clinical results.):

Stem cells 'reverse' MS

"The researchers conclude that 81% of patients showed a reversal of neurological disability."

My current status update. . . . . Although I still have some residual symptoms (mainly leg weakness) that had arisen prior to my stem cell transplant, I'm still cured of MS. And that means that I have had absolutely no new or further progression of my disease (actually I have had only regression of my symptoms, which I will describe in more detail). I've had no relapses. No added symptoms. No added physical disability. Absolutely none at all. So continuing from my previous 6 month update my MS disease is still "stopped," as I expect it will be for the rest of my life. And just as important, all of my already-existing symptoms continue to slowly improve (reverse). And I mean all of them. This really amazes me because such symptomatic reversal is normally never heard of in secondary progressive (SP) cases, such as mine. Every month that goes by I feel a little better and less MS-afflicted as compared with the previous month as my body repairs (or compensates for) the MS damage that has already been done prior to my transplant. The remaining physical deficit which is entirely attributable to my disease prior to the stem cell transplant continues to lessen in it's severity over time. I now have substantially less fatigue. Where I've had muscle weakness, I get stronger and have more stamina. Where I've had numbness, now I can feel again. Where I've had parasthesia, now it doesn't tingle when I'm at rest. Where I've had some balance problem before, now I can walk without looking like I'm drunk. Where I've had vertigo, the room hasn't spun at all since my return from the treatment. Where I was afraid to go any place that might have too-warm weather or a high temperature, now I can take the heat and don't feel hot all the time. And the most important thing. . . . I can now take my three year old son to the park and play with him, something surprisingly difficult to do before my stem cell transplant.

In short, without exception, every single one of my MS-related symptoms continues to slowly improve (reverse). And this is all while I have stopped all MS medication. After 15 years of use, I haven't taken any MS disease-modifying drugs (Avonex interferon) since November, 2009. Extrapolating from where I am right now I believe that at 2 years post-transplant it's possible I might not be able to tell from my symptoms that I had MS before being cured. Or worst case, although my symptoms are unlikely to dissappear completely (I don't expect 100% reversal) it's likely they will considerably fade into the background and not have a substantial impact on my life. I'm hoping for an EDSS of 1.5, or less. I think its entirely possible, perhaps even likely.

Just a side note about functioning. . . . . I used to be an avid auto mechanic (worked my way through college this way), but for the past several years prior to the stem cell transplant I was unable to do even simple auto repair tasks because I was physically unable due to the MS. However, last month (8 months post-transplant) I was able to crawl on my back, get under my Jeep and change the transmission pan. Not a big job but something I absolutely could not have done prior to my transplant. It's wonderful to be able to regain capability & functioning. Thanks to the stem cell transplant at least I no longer feel useless when it comes to working on our family cars. I'm not sure if I'm more impressed with my new transmission pan, or the fact that I could actually install it myself. I guess both. . . .

Summary. . . . . . . as of today I haven't felt this great in over ten years. It reminds me of my own maxim; "It doesn't matter where you are. It only matters where you're going." And within my horizon (although not quite there yet), I think I'm eventually going to be at the point that it will be difficult to know that I ever had MS.

Onto vaccinations which are required following myeloablative hematopoietic stem cell transplantation. This is required because following the ablation and reconstitution of my immune system during the stem cell transplant conditioning regimen (i.e. chemotherapy) my body's antigen-reacting effector memory B-cells and memory T-cells have lost their antibody production and defense inherited memory. This means that due to the stem cell transplant my body's adaptive humoral immunity can no longer "remember" how to fight the specific childhood diseases that I was immunized against so many years ago. This is the same reason that the immune system is "reset" and no longer mounts an autoimmune attack against the myelin and nerve tissue in my body, and is why I no longer have MS. My body's immune system has "forgotten" what & how to attack my own tissue. A wholly welcome main effect of the stem cell transplant. Getting re-immunized is such a small price to pay for the benefit I have gained.

So recently I met with my regular General Practitioner & Internist, Dr. Dale Yamashita to discuss being re-immunized. I think I mentioned in a previous posting that he is a great doctor, a great clinical practitioner and a wonderful person, to-boot. He is on my list of people that I'd loan my house keys to. As opposed to some other doctors I've interacted with, he has been very supportive in my endeavor to seek a stem cell transplant to cure my MS (I think he understands well the sound underlying science of performing a stem cell transplant to cure MS, and other hematological-rooted autoimmune diseases). His contribution to my overall good health cannot be overstated. He has worked closely with me well prior to my transplant procedure, and now helps me in doing what is needed to get the necessary follow-up care since my return from Germany. I consider him an important part of the reason I am cured of MS and am thankful for his active participation in helping to keep me healthy.

Together with the great practitioner (click to enlarge). . . . .

And here's Dr. Yamashita's bio page from the Kaiser hospital website. If you are a big name Hollywood movie star that can afford to pay big bucks for your own private physician, I suggest you hire Dr. Yamashita. You won't be sorry:

Together with the Germany recommendation time frame of starting re-immunizations at 6 months post-transplant, Dr. Yamashita and I also reviewed the US/Canada NIH/CDC guidelines for post BMT recommending re-vaccination beginning at 12 months:

Immunization for bone marrow transplant recipients

There is data on this subject because there are many people every year that receive stem cell transplants for treatment of cancer and they also lose their immune memory and require re-vaccination. Dr. Yamashita went and did some clinical investigation on his own and then sent me the following e-mail detailing the vaccinations I should be receiving along with the recommended schedule (I personally think the three-dose Polio vaccination is the most critical since contracting Polio of which I currently have no defense has such potentially serious implications):

Sent: 8/25
/10 8:10 AM
To: George J Goss
Subject: Vaccines

Hi George,

I have the information on the vaccines. From my (US) research, and info from Dr Vempaty [BMT oncologist] as well as one of our infectious disease specialist, it looks like you shouldn't do it earlier than a
year post transplant. But I recall you mentioning that International recommendations are different. I have ordered [in the Kaiser Hospital injection clinic]:

Pneumococcal vaccine at 12 m

TDAP at 12m

TD at 14 m

HIB at 12m and 14 m

Polio at 12 and 14m

Hep b series at 12 and 14 m

I didn't order the 24 month vaccines (MMR, hep b, polio, TD, HIB, pneumococcal) since I cannot order that far in advance. [I will contact him when it's time for the 24 month vaccinations.] You need the pertussis only once. Thereafter, the two subsequent tetanus vaccines are without the pertussis. I think I did this right! Oh, Influenza vaccines require no order and will be starting on Oct 2. Keep your eyes and ears open.

Single page summary of required immunizations following myeloablative HSCT [not required for a non-myeloablative transplant procedure] (click to enlarge):

----- Message -----

Sent: 8/25/2010 10:29 AM
Subject: RE: Vaccines

Once again, thanks very much Dr. Yamashita.

I now consider you a researcher in addition to a clinician. You have done a wonderful (and complete) job in understanding the necessary immunization requirements. I'll take your understanding as my guidance and wait until a little closer to a year for the first round (I'll probably do it at +10 or +11 months). So thanks very much for ordering the vaccines. We'll discuss again prior to the two year immunization round. But no matter what, I won't forget as the time approaches. I hope you don't mind. . . . I'm going to post your e-mail along with your
picture on my next blog posting. I think there are a lot of people in the cyberworld that are interested in this info and will benefit from your info.

Thanks & regards,


Additional comments:

I traded some e-mail correspondence with a friend that also has MS. He forwarded my blog address to a highly experienced neurologist to see what feedback he might have. And the neurologist’s response is along the lines of exactly what I would expect. He writes. . . . .

To define a cure you will need to follow patients for up to 20 years. If MS is an autoimmune disease autologous and allogeneic bone marrow transplant (BMT) may cure the disease. My problem with this is that BMT come with a mortality of ~5% (European Registry data); i.e. 1 in 20 patients will die from the procedure. Alemtuzumab (Campath-1h) is probably as effective as BMT with a much lower mortality; I would estimate the latter to be less than 1 in 500 at present and it may be lower with improved vigilance and monitoring of complications. This is why our centre is participating in the Phase 3 Alemtuzumab trials and have not started a BMT programme.

And my reply to my friend regarding the neurologist's comments. . . . . .

Thanks for forwarding the doctor's response message. A very predictable one at that. I have never known of any clinical neurologist anywhere in the world (except for Dr. Mark Steven Freedman at the Ottawa Hospital Research Institute) that will support a stem cell transplant procedure for MS. Neurologists have no training or specialty in BMT procedures and don't look at the underlying valid scientific principles of the mechanism of disease cause & cure. They just want to keep treating the symptoms, without regard to the underlying cause. That's why the doctors that most support a stem cell transplant procedure for an autoimmune disease are the ones that best understand the underlying etiology, like immunologists. And even this neurologist's comment of a 5% mortality rate (for an autologous stem cell transplant) is straight off the script page, without any value-added thought whatsoever. It used to previously be true, but no longer. Good transplant facilities have a 1% (or less) documented mortality rate for an autologous transplant for otherwise healthy people (like the Heidelberg facility I went to that has a low mortality rate). And also, when he states "(Campath-1h) [a monoclonal antibody rat protien] is probably as effective as BMT," he would know this how?!!! I'm sorry to hear such an ignorant & unsubstantiated statement from the mouth of a board-certified physcian. Can anyone say "conflict of interest?" And actually, Dr. Richard Burt (whom pioneered US-based stem cell transplantation protocols to cure MS) has the opposite view and refutes such a claim that he spells out in this lecture video clearly explaining that HSCT is the superior treatment for achieving the best clinical outcome. . .

But what I think galls me most about clinical neurologists that oppose a stem cell transplant for curing MS is that they all seem to think that no one is actually cured unless they can prove it by dying without any new disease activity. That means no one can ever possibly be cured by their own definition, at least until they're dead. How does that help anybody?

I have always been consistent with my definition of a "cure." Just stop the disease (which most doctors call "remission"). So this is why I consider my disease "cured" (actually better than cured because my disease is reversing) and feel I am not misusing the word. I'm glad I stopped taking my treatment cues from the prevailing & common mainstream medical norms and instead juxtaposed my neurologist into the role of "helping" me. That's why I decided to take control of my own disease and get the stem cell transplant. The best thing I ever did for my health.

But anyway, it’s unfortunate that so many neurologists all over the world are so damned closed-minded. If I listened to the prevailing advice (to not have a stem cell transplant) my life would really suck right now, headed for a wheelchair and I'd still be taking drugs to treat my MS that offer no hope of a cure. (It seems like that's the main treatment skill many neurologists have. . . . just prescribing drugs. Sad.) Since my transplant procedure I am soooo happy with my life and happy about functioning with a reduced MS disability load. And that's worth more than money, or an MD's narrow-minded opinion.

Thursday, June 24, 2010

6 month report - I'm cured!

So I'm going to say it clearly right now. . . . .

The stem cell transplant worked and
I am cured of MS!

For clarification . . . . my definition of a "cure" has always consistently been the same: "A stopping or halting of the progression of my MS disease." And indeed, my MS has been stopped in its tracks. For any six month period of time during the five years prior to the stem cell transplant, my MS condition worsened and at no time did it ever improve. This is the first time for me that my condition did NOT worsen over a six month timeframe. And in fact, I have actually had some reversal (improvement) of disability / deficit of existing symptoms which is virtually unheard of once MS enters a (secondary) progressive phase such as mine and something I have never previously experiened. I expect to continue to actually improve (existing symptom reversal) in a significant manner going forward over several years thanks solely to this stem cell transplant procedure. As of now I have much less fatigue, a little (but definitely noticeable) less weakness, my gait (ataxia / balance) has improved, the perpetual 'resting' parasthesia I had in both of my lower legs for several years has completely gone away and I'm not sensitive to heat as I was before the transplant (it's wonderful to be able to now take a hot shower after years of only being able to tolerate lukewarm water!). And this is all while I have stopped all MS medication since November, 2009 (no more Avonex, or any other MS medication for me anymore). My body's immune system has been successfully "deprogrammed" and reset and no longer attacks my own body & nerve tissue, giving my body a chance to heal (or compensate for) the damage that has already been done. For me, a worsening of my MS condition is very likely never going to happen again thanks to the treatment which I am now officially calling a "cure."

A note about this cure. . . . . many, if not most people including myself additionally define a MS cure as " lifelong." And I suspect, expect and am confident that my stem cell transplant has resulted in a lifetime of cure for my MS (the mechanism of action of the very valid foundation science supports this conclusion). Unfortunately I can't prove this today with absolute 100% certainty because no one can predict the future with 100% accuracy, even though I consider it highly probable that this cure will last throughout the remainder of my life. The main reason I believe this cure will last a lifetime is because of the surrogate indication of loss of childhood-acquired immunity. People receiving a myeloablative stem cell transplant lose their disease immunity memory (including that acquired in childhood through illness exposure and vaccinations) which requires that people going through this procedure must be re-vaccinated for all the usual diseases (Polio, Tetanus, MMR, etc). This is a clear indicator that one's own body "forgets" how to mount an immune attack from memory. This also indicates that once the body's autoreactivity "forgets," it is rather unlikely that it will magically & spontaneously remember once again for no reason. This means that MS progression due to autoimmunity is no longer active, stopping the disease process. And also significant is that so far 100% of the people that have received stem cell transplantation with MS symptomatic improvement have also reported a sustained halting of their disease. . . . so far not a single person that has undergone a hematopoietic stem cell transplant has reported only a "temporary" halting of the progression of their MS (the phase I HSCT clinical trial patients have now exceeded a full decade of continuing disease remission). I have the faith and confidence that the improvement I have already seen & experienced will continue indefinitely. I would bet real money on it. It's a great confidence builder that all the people that have had this procedure in which it worked successfully have all reported indefinite duration of efficacy. I will continue to report my progress into the future.

And I know I said it a few times before, but I have to say it one more time because it is more of a blessing than I previously had ever imagined it would be. . . . . I love that I no longer have to inject interferon (standard immunomodulator drugs to treat MS don't stop the disease, they only "delay" the accumulation of physical deficit, most of which are required to be injected). Without a stem cell transplant I would have had to take medication for the rest of my life. But now that my MS disease activity has stopped I WON'T have to do it for the rest of my life. Never again. Even though I was somewhat used to jabbing needles into myself to administer the medication that I did for so many years, I would be lying if I said that I enjoyed it. So just this one aspect of being cured of MS has substantially contributed to the improvement & enjoyment of my life (not to mention a substantial savings of money no longer spent on medication!).

Although I have always been ambulatory (but limited in my walking distance), there's no question that prior to my stem cell transplant cure I was headed in the direction of eventually being in a wheelchair. Following the transplant I am now definitely heading in the opposite direction, distancing myself from ever being in need of a wheelchair and I am continuously increasing my walking distance. I'm happy to have the confidence that I have vanquished that monster-on-wheels for good. However, some people might take exception to the way I am defining a "cure." Some people might only accept a cure as defined by quick & substantial reversal of disease symptoms. And this is possible with some people with (RR)MS. For me I expect a continual (albeit slow) reversal of my already-existing (SP)MS symptoms and will continue to improve (deficit reversal) over time, probably for several more years to come. The main issue is that a stem cell transplant is more effective (or more rapid) of a cure if performed early in the disease cycle as soon as possible following initial diagnosis of MS as opposed to later when there is less probability of a dramatic quick & positive impact. So here is a video for me to explain on the topic of symptom reversal:

(The Blogger website is having problems uploading videos. So please see my video via the following Youtube link):

And by the way. . . I'm not the only person to be cured by this procedure. Many people with MS have been cured with a hematopoietic stem cell transplant (HSCT). An interesting video of a "typical" cure case using HSCT, along with some brief commentary from Dr. Richard Burt whom pioneered the treatment here in the US. Interesting that this patient (Barry Goudy) was diagnosed with MS the same time I was. It's just too bad that I waited years after him to have a HSCT. But I'm still happy that I did the transplant procedure:

And another (brief) video of Barry Goudy, successfully treated with hematopoietic adult stem cells for Multiple Sclerosis testifying at a United States congessional panel:

And another video (from Brian Tilaro) that reports on his (improved) MS status at just 4 months following his stem cell transplant. I have communicated with Brian and he continues to show symptomatic improvement to this day a couple years following his transplant. He describes his current status, in his own words. . . . . "It has been nearly two years since I was released [from the hospital]. My MS symptoms remain, but they are [only] the same symptoms I had prior to the [stem cell transplant] procedure. [The existing symptoms] have diminished gradually, but very significantly. My strength also slowly returned. I am now walking normally and can stay on my feet for hours without much pain. I no longer use a cane at all. I have not had a bad depression episode since July of 2008. Since my immune system was killed [and then reconstituted] by the procedure, I'm optimistically certain that I won't get any new relapses (No new lesions in my brain). The MRI's I have received since the procedure have shown no new or active lesions. :)"

And then in this video watch through the first patient with Lupus cured with a stem cell transplant and watch the second segment of the woman with MS that was cured with a stem cell transplant:

And a brief story a young man having had a stem cell transplant cure. As stated in the article "And today, Edwin's symptoms of MS have completely disappeared. 'I really don't feel like I have multiple sclerosis anymore,' he said.":;lst;1

Although no one from this diverse set of people would claim a stem cell transplant is easy, you'll notice the consistent message theme of each person treated with this procedure to cure their MS shown here, including me, is that they have no regrets from undergoing the procedure. It is also universal that everyone discontinues all disease-modifying MS medication following the procedure because the stem cell transplant stops further progresion of the disease and there is & will be no further added disability due to MS. And with knowing what they know now, no one shown here (including myself) would have done anything differently regarding this treatment. However, clearly there must be at least a few people somewhere in the world that are not happy with the procedure as a cure for MS because a stem cell transplant does not have 100% cure rate for MS. It's closer to an 85% cure rate, but still the best demonstrated cure that's out there! (Likely the people in which a stem cell transplantation failed to cure their MS had a very advanced (primary or secondary) progressive stage of the disease in which they were not ambulatory since SCT is less effective in treating this late stage & advanced progressive disease status.) So far I can only find people that are grateful they were able to receive a stem cell transplant to treat & cure their MS. If/when I do find anyone that is unhappy with their transplant beyond some period of time following the procedure (or a failure of the procedure to work on a personal level), I'll be sure to post it in a future blog page. It would be nice to know a complete and fair picture of the treatment results. But I think it's not unfair to say the overall results of a stem cell transplant are overwhelmingly on the positive side, especially for people that are still ambulatory when treated.
Stem Stem Cell "Treatments" (not Transplants)
I would like to make an important note here regarding stem cell "treatment" that many people are receiving. This is NOT the same thing as a stem cell "transplant," and is actually just another form of useless snake oil. Here is a passge from my very first posting of November, 2009 of this blog:
. . . . I should mention regarding other forms of stem cell therapy that are offered in an after-market environment. There are many companies offering stem cell therapies that collect stem cells from adipose fat tissue, bone marrow and other sources, and then do an IV infusion and/or intrathecal injections [to re-introduce these cells back into the body without the use of chemotherapy]. The theories cited for these treatments are usually valid, but from what I have learned not a single such "stem cell procedure" of this type has shown any clinical evidence for curing MS. Probably the downside risk is small for these therapies, but the upside usually fails to materialize and can be drowned out by the marketing hype of these companies (which is why these therapies are not available in the United States due to FDA restrictions). I feel sorry for people that get sucked into these programs that offer little clinical benefit beyond a placebo effect. And I feel especially bad for anyone seeking such a treatment in lieu of the true cure of a stem cell (bone marrow) transplant. . . . . .
Costa Rica, Panama and China have been the largest treatment locations for this clinically unproven therapy, although there are also many other (unregulated or unenforced) countries where such companies operate. Some facilities even un-necessarily venture into the ethically & morally questionable use of embryonic stem cells when adult hematopoietic stem cells are actually the preferred curative method where there exists no controversy or moral question. In fact, the Government of Costa Rica recently came to thier senses and decided to do something about companies offering such services with undemonstrated clinical efficacy and shut down the largest stem cell treatment center (ICM / Medistem / Cell Medicine), and likely will continue to do so with others still operating in the country. I'm thinking China likely will not make any changes to the status quo so long as it brings in money for them any way possible. Even if it is unethical, as such stem cell "treatments" are.

Check out this video excerpt from 60 minutes regarding stem cell quackery around the world:

"This isn't allowed in any serious country in the world," Health Minister Maria Luisa Avila [of the Costa Rican Government] said in a telephone interview. . . . . .

But still many people with MS are desperate for a treatment and some are angry the facilities are being shut down. The following video that I found on Youtube is of an individual that went to Costa Rica and had some of this unproven mesenchymal stem cell "treatment." I salute her for being proactive and wanting to take control of her disease, but unfortunately she operated off of flawed information. It is no mystery that she is unable to report stopping of the disease or meaningful improvement beyond normal & expected improvement following a relapse of her MS symptoms (the fact that she continues to have relapses at all is evidence that her MS is not cured). That is because she got the wrong stem cell medical protocol. If she would have received a hematopoietic stem cell "transplant" instead of a mesenchymal stem cell infusion "treatment," likely her disease would have been completely stopped and even reversed. I always keep in mind. . . . In-vitro (in the test tube) results do NOT equal in-vivo (in the patient) results. In the end the only thing that matters is clinically presented outcome. (My MS is not just stopped, it is slowly, but substantially reversing even as you read this. All without any use of MS drugs. That is how I define "clinical outcome" of a cure.) You'll also notice in the following video that she indirectly mentions the hematopoietic stem cell 'transplant' clinical trials in the United States (HALT-MS & MIST) focussing only on the chemo (which admittedly is a hard, but not impossible-to-endure part of the procedure) and completely ignores the fact that this is the only clinically-demonstrated procedure to cure MS today. The only comment contribution she makes for stem cell transplantation is that she uses the word "harsh" to describe the chemo (which I don't dispute), even though the chemo is a critical and necessary part of the cure. The chemo is absolutely required to reset the immune system flawed memory, otherwise there would be no cure without it! Like many people I'm still baffled as to why more people with MS don't recognize a stem cell 'transplant' for the only cure that it is for MS as opposed to the irrational belief in other un-scientific & unproven treatments. Is it just the money (cost of procedure)? Is it because they're really scared of the chemo treatment? Or perhaps something else that is more fundamental to human behavior? At this point your guess is as good as mine.
I just ask that you not be confused by all the (sometimes conflicting) terminology floating around out there regarding stem cells (as this individual clearly is). There is no substitute for the cure of a hematopoietic stem cell transplant (if the procedure does not use chemotherapy to ablate the immune system, then it's NOT a transplant). And the words from this individual receiving the wrong treatment tells me that there is still a lot of confusion out there. BTW. . . the stem cell treatment center that she went to, ICM in San Jose, Costa Rica, is the same stem cell center that has been permanently shut down by the Costa Rican Government due to lack of any proven clinical efficacy or medical usefulness:

Her own words that her "treatment" (that I am sorry) did not cure her:

And now for me that I have hit the critical six months post-transplant milestone, I am now officially past the most critical recovery time. And since I never got an infection or reactivation of any dormant virus, I'm not likely to get sick in such a manner from this point forward. Well, the odds are unlikely that I will get sick from anything specifically related to my treatment anyway. Now I will stop taking the Bactrim antibiotic and Acyclovir antviral medication.

Next stop. . . . before the end of the year I will start a re-immunization schedule for childhood diseases that I currently have no immunity (the same reason I no longer have MS).

And I would also like to mention what has become obvious to me while researching and being involved with this adventure in curing my disease. . . . . Although it works well for Multiple Sclerosis (and several other autoimmune disorders), an autologous hematopoietic stem cell transplant will not cure every disease. However, it has been shown to have similar (good-to-excellent) curative results for other hematologic-based autoimmune diseases. If I were otherwise afflicted with any of these other types of hematologic-based autoimune disorders (there are likely many more than I have listed here), I would also likely seek the same transplant procedure to cure it:

- Rheumatoid arthritis
- Scleroderma (Systemic Sclerosis)
- Inflammatory Bowel Disease (Chrohn's disease & ulcerative colitis)
- Systemic Lupus Erythematosus (SLE)
- Polymyositis
- Evans syndrome
- Hashimoto's thyroiditis
- Chronic inflammatory demyelinating polyneuropathy (CIDP)
- Graves' disease
- Autoimmune hemolytic anemia
- Autoimmune blistering diseases
- Autoimmune lymphoproliferative syndrome
- Myasthenia gravis
- Psoriatic arthritis
- Wegener's granulomatosis
- Sjögren's syndrome (Mikulicz disease, Sicca syndrome)
- Churg-Strauss syndrome
- Microscopic polyangiitis
- Relapsing polychondritis
- Pemphigus vulgaris
- Dermatomyositis / Polymyositis
- Ankylosing spondylitis
- Sickle Cell Disease can be cured with a similar HSCT procedure utilizing mixed chimerism with a partial match HLA doner

If you know someone with one of these diseases, you may want to let them know about the possibility of a hematopoietic stem cell transplant as a means to arrest the progression of the disease so they can make up their own mind.

From: digginya
July 4, 2010

I have scleroderma and RA as a result of that. I imagine this surgery is very pricey, no?

From George Goss
Julu 4, 2010

Hi digginya,

Interesting that you simulataneously have two very concerning autoimmune maladys that are not just serious, but also both have a hematological origin in thier pathology. Although I have never been afflicted with either disease, I can imagine that it may be quite serious for you. You have my empathy and compassion for what you are likely going through (and faced with) as a result of of these disorders.

However, because both of these autoimmune conditions are rooted in hematological causes (just like multiple sclerosis), both of these conditions have a greater chance-than-not of being cured (stopping of progression) by means of an autologous hemotopoietic stem cell transplant (AHSCT, same as I outline here in my blog). And although I don't know the status of your disease progression, there is a good chance that some of the damage (or physical deficit) can actually be reversed following treatment with an AHSCT. I refer you specificlly to the Europen retrospective study from Switzerland which shows good early treatment outcomes for a range of autoimmune disorders (including scleroderma and RA) and a good reason to consider AHSCT (you may want to take a close look at Table 5 in the paper which shows pooled results of clinical outcomes that indicates very good curative results for both Scleroderma and RA):

Likely, if I were in your shoes I would probably seek the same stem cell transplant treatment as a cure for the condition(s). An opportunity to potentially cure both diseases at the same time with a single stem cell transplant procedure "killing two birds with one stone." The cost would be the same as I incurred in Heidelberg, Germany at 50,000 Euros plus travel & lodging costs from whichever location you are. (Treatment of unexpected complications, if it were to occur, would be in addition to this basic cost.) Yes, it's a lot of money. But it comes down to the question of "how much is a cure worth to you?" I cannot answer that question for you (or any other individual). But for me, it was well worth the money (and time & effort) to cure my multiple sclerosis.

Please let me know if there is anything else I can answer for you.

Very best regards,


Additional note added July 6, 2010:

I should mention that a stem cell transplant cure is NOT specific to any one medical treatment facility. I chose Heidelberg for my own specific reasons (listed in the blog). However, if you are looking for a less expensive place, I'm certain there are many around the world that can perform a BEAM protocol procedure for less money. If I were otherwise unable to have the procedure completed in Germany, my backup plan was to have it done in India where the procedure cost is substantially less. I had contacted the Apollo hospital network (good reputation) and they offered to do an autologous stem cell transplant procedure for me in India for a total cost of approximately USD$40,000 (see my Day +58 posting for contact info). So please don't feel obligated to receive a SCT at any one specific facility without good reason. I just reccommend Hiedelberg because the experience for me was excellent with minimized risk (and the procedure successfully cured me of my MS).

The CCSVI mythology

Thank you for visiting my blog. If after reading this page, I hope you will have an opportunity to scroll back up here to the top and follow this link to another page that I think has valuable information:

"I worry that, especially as the Millennium edges nearer, pseudo-science and superstition will seem year by year more tempting, the siren song of more sonorous and attractive."

- Carl Sagan

How fitting I found this quote of Carl Sagan's to be especially relevant to the subject in this posting. And on this subject I know this posting is going to upset many people in the MS community that are looking for an easy solution to cure MS. But sometimes the truth (or in this case, the facts) hurts. This page reflects my opinion along with some rational scientific interpretation about CCSVI since this is currently all the rage in the MS community. If you have a sensitive disposition and are unable to listen to other points of view, please stop reading now. I don't mind if others have a different opinion. I'm not going to try to force my opinion on anyone else that does not agree with me. If you have MS, are only looking for the cheap & easy cure solution (a stem cell transplant is neither), please don't read my blog. You'd be better off going somewhere else to get your info because I like to use science as my tool for finding a cure. And as a scientist, chasing the latest "fad" cure is not something that I do.

So for those that don't know about CCSVI, it stands for "Chronic CerebroSpinal Venous Insufficiency." A term and theory invented by Dr. Paolo Zamboni (not the same guy that invented the ice scraper). Zamboni is an Italian vascular surgeon, and as the story goes he was looking for a way to cure his wife of MS. So he decided to fall back on his area of expertise (which has nothing to do with immunology) and look for a "vascular" cure for MS. He purportedly theorized that MS is caused by a lack of blood drainage from the cranium resulting in an excess of Iron contamination of the nervous tissue which thereby causes cellular damage. So his easy (and less expensive) solution to the problem has been to do outpatient angioplasty (or alternatively a stent insertion) of the jugular return vein from the cranial cavity and thereby lessening the Iron exposure to the nerve tissues.

Here's a description. . . .

This treatment is also euphemistically called "the Liberation Procedure." But it won't liberate anyone from multiple sclerosis. The only thing it will liberate is money from your wallet for an ineffective and possibly dangerous procedure (people have died in the course of receiving this treatment).

But don't take my word for it. . . . . The top Germany NGO on MS has already issued a statement on the subject of CCSVI; "In our case, the lack of scientific Zamboni et al. study results did not present a sound scientific methodology and are therefore worthless and even ethically questionable." Ouch! Additionally, the Multiple Sclerosis Society of Canada (MSS) was quoted to say “. . . . . at the present time there is insufficient evidence to suggest that this phenomenon is the cause of MS.” According to Dr. Paul O'Connor, a neurologist at Toronto's St. Michael's Hospital "There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients." The United States National Multiple Sclerosis Society (NMSS) has not yet issued a definitive statement on CCSVI because, I believe, they don't want to risk interrupting any funds from disaffected donors. Probably a wise business move for
thier own benefit.

This first report succinctly lays out the facts of the fallacy. . . .

Massive study disputes Zamboni theory of multiple sclerosis

"David Hafler, professor and chair of the neurology department at the Yale School of Medicine, said it’s “shameful” so much attention and investment is being placed on an idea that is simply not true in light of findings about the immunological roots of the disease."

Zamboni MS vein theory debunked by study

Concerns about controversial MS [CCSVI] treatment (BBC)

". . . . . seven published studies by independent researchers have failed to back up Zamboni's findings.

Some of those research teams have suggested that what he interpreted as abnormalities were in fact normal and harmless anatomical variations found in everyone."

And a BBC follow-up video:
Concerns about controversial MS [CCSVI] treatment (BBC)

"A new study provides more evidence that multiple sclerosis (MS) is not caused by a blood vessel condition [CCSVI], as some research has suggested."

"Based on those findings, Marder's group said MS patients should not undergo surgery to open up those blood vessels."

And a recent informational article based on info from the well respected Annals of Neurology. . . .

New Studies Question 'Venous Congestion' as a Trigger for Multiple Sclerosis

BOSTON -- August 2, 2010 -- Two new studies challenge the controversial hypothesis that venous congestion -- chronic cerebrospinal venous insufficiency (CCSVI) -- contributes to the development of multiple sclerosis (MS). This theory has resulted in many patients with MS receiving experimental endovascular angioplasty, an MS treatment unproven by clinical trials. The studies refuting the CCSVI theory with the first negative medical evidence on the subject are available today in the August issue of Annals of Neurology. . . . .

. . . . . These 2 papers should add a note of caution for MS patients and physicians who are contemplating interventions for possible venous abnormalities based on the findings of Zamboni. . 

. . . . . "Our results call into question the existence of CCSVI in a large proportion of patients with MS," said Dr. Doepp. "We did not find supporting evidence that cerebral venous congestion plays a significant role in the development of MS. . . . . 

. . . . . A second study by researchers at Umeå University in Sweden also concluded that CCSVI does not contribute to the development of MS. . . . . "Our study found no support for using endovascular procedures such as angioplasty or stenting to treat MS patients," Dr. Sundström affirmed. . . . . .

MS genetic discovery casts doubt on [CCSVI] vein theory

"It is now clear that multiple sclerosis is primarily an immunological disease. This has important implications for future treatment strategies.". . . The findings also cast doubt on the recent theory proposed by Italian vascular surgeon Dr. Paolo Zamboni that MS is related to blocked neck veins.
One study published this week in the Archives of Neurology found no significant difference in venous abnormalities between MS patients and healthy controls.

And also the following news articles summary as reported in the health sections of both the Wall Street Journal and the BBC. . . . .

Studies Cast Doubt on New MS [CCSVI] theory (WSJ)

Here is a great article from NPR that quotes one of the biggest medical profession's participants in the whole world of study of CCSVI (having earlier collaborated closely with Dr. Zamboni). And if Dr. Robert Zivadinov of the Buffalo Neuroimaging Analysis Center in New York says it, then this must have important meaning.

Doctor Challenges Cause Of MS And Treatment

"Meanwhile in Buffalo, Zivadinov says his research on CCSVI already shows a clear picture emerging. "CCSVI is not the cause of MS but might be a consequence or a contributing factor to progression, and I think that has to be studied," Zivadinov says."

And from a very important scientific standpoint I think this investigational result from Wayne State University clearly indicates that it is the immune system's T-cells (and their corresponding wayward epitope repertiore) that cause the underlying MS disease progression and relapses. These medical researchers could not have possibly produced this defiinitive concrete data result if the cause of MS were CCSVI:

Researchers publish results settling multiple sclerosis debate

"This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles."

And. . . .

Discovery of new genetic risk factors for multiple sclerosis confirms that the disease is of immunological origin [not vascular]

And here is a CBC news segment on the subject of CCSVI treatment people are getting that clearly indicates the procedure is nowhere near risk-free (an abysmal risk/benefit ratio since there is no reproducible demonstrated benefit to be seen here, just the chance of injury or death). . . . . .

Here is a brief lecture on CCSVI from
Dr. Klaus Schmierer, a consultant neurologist at Barts and The London Hospital and Queen Mary's University of London. I especially like his talk because he aptly brings in the issue of The Scientific Method in evaluating CCSVI as a (lack of) cause of MS.

CCSVI - Big Idea Little Evidence [actually, NO direct supporting evidence]

New Genes Confirm Immune System 'Intimately' Involved in MS

 Vascular Theory Takes a Hit - On the basis of this new research, it is clear that MS is "primarily an immunological disease. This is the way to nail this disease and get on top of it," Dr. Compston said. There is also evidence of "an interplay between genes and the environment," he noted.

And I found a blog website written by a highly experienced vascular surgeon (Dr. Colin Rose) that goes into far more detail regarding the myth of CCSVI:

The Zamboni Myth: Why “CCSVI” is Surreal

One of my favorite passages from this site. . . . . .

There are a number of cardiac conditions, such as tricuspid insufficiency and constrictive pericarditis, in which central venous pressure and jugular pressure are markedly elevated over long periods. Never has MS been described as a complication of these diseases.

But the MS Society of Canada has now been intimidated by desperate patients into funding a trial of the Zamboni procedure. I will be surprised if any of these grant applications are approved by a scientific review committee. . . . . If “CCSVI” is causing brain pathology, it must do so via some mysterious, unmeasurable, un-disprovable “reflux”, not amenable to the scientific method.

Zamboni’s myth is not science; it’s a surreal artistic creation in that this process can never be reproduced by other investigators. But all this is really irrelevant anyway because such flow patterns can never damage the brain without causing an increase in cerebral capillary pressure. Any MS patient with a large enough increase in venous pressure to cause red cells to leak out of small veins would have a head that looked like a leg with severe varicose veins; his eyes and tongue would protrude and his face would be very swollen and blue. So, there is no point in even funding a trial of the “liberation treatment” because it is impossible to know what Zamboni actually did and the basic science says that there no point in even trying to figure out what he did. When one doesn’t even know how to reproduce a test, how can one do a clinical trial of it? No more money should be wasted on the Zamboni myth.

We will keep our readers updated on the expansion of the Zamboni myth and it’s inevitable implosion. When it does implode, I would hope Dr. Zamboni will indemnify all patients and insurance plans who wasted money on imaging for “CCSVI” or “liberation.”

CCSVI treatment as a cure for MS is really just junk science that has yet to withstand any valid scientific scrutiny. What started me really thinking about this is the question "for people with hemotomachrosis (a genetic abnormaility that results in EXTREMELY high Iron in the blood), why do they not experience MS at rates greater than the normal population?" Additionally, if MS is a vascular disease then why do immunomodulators (interferon, glatiramer acetate and tysabri) have been proven to slow down the disease for several hundreds of thousands of people taking these drugs around the world who are afflicted with MS? These drugs should otherwise have no positive effect at all if the cause of MS is "vascular" in nature. The answer is because MS is not a vascular disease and is not caused by high Iron exposure to nerve tissue (as CCSVI purports). The putative mechanism of cure for CCVSI treatment and that of hematopoietic stem cell transplantation (for now the only scientifically demonstrated cure for the majority of people that choose to receive the procedure) is completely different. And these very dissimilar treatments can't both be correct. Another particularly interesting supportive piece of evidence that MS is not vascular, but is instead an autoimmune disease is that pregnant women that also have MS that are in the third trimester of pregnancy do not experience MS relapses. This is because the human female body suppresses her own immune system so as not to reject the growing baby from her body. The side effect being that the MS disease activity is suppressed during that same time, as well.

And in addition to all the scientific results already established in the stem cell transplant clinical trials, I now know that a stem cell transplant cured me because of my lack of clinical progression (and clinical symptomatic reversal, as well). I've taken the time to ensure it's definitive, not just a placebo effect.

A friend of mine (fellow MS'er that also has a scientific mindset) astutely made the following rational comments that add a plausible explanation for the existing CCSVI bood flow study results out of New York. . . .

The University of Buffalo published the first U.S. study of
the link between CCSVI and MS earlier this year. The
patients in the study were volunteers, so it's not the ideal
of a truly random sample from the general population, but
it's better than Zamboni's sample. All were examined
concurrently and the examiners were blinded with respect to
the patient's MS status. The result: Among the MSers, 56.4%
had CCSVI, 10.2% were borderline CCSVI, and 33.4% did not
have CCSVI; Among the healthy controls, 22.4% had CCSVI.
Now, this is a strong correlation, but it is far, far from
being cause and effect. And, the results have not been
examined for other contributing factors such as lifestyle.

Let me suggest a hypothesis I find a lot more plausible than
"CCSVI causes MS"; that is, the sedentary nature of many MSers
causes CCSVI. Think about those bulging veins you see on
body builders; I bet those people don't have CCSVI. The ratio
of 2 to 1 CCSVI in MSers vs. healthy controls might just be
the ratio of sedentary people in the two populations.

This supports the "correlation is not cusation" concept.
There are years of work ahead in examining CCSVI and it's
relation to MS. Right now, I wouldn't give a plugged nickel
for the chances of CCSVI being even so much as a minor
contributing factor in MS.

To continue. . . . . there has been no 'valid' clinical study of any type showing any form of lasting patient clinical benefit (other than a temporary placebo effect) for the CCSVI procedure as has been shown in several scientifically-valid clinical trials for stem cell transplantation (which has finished all FDA stage II trial patient treatments and the stage III trial is now in full swing here in the US). Zamboni's initial biased "study" (I hate to even call it that) was performed on a small group of MS patients that had the relapsing form of MS. And because he only included people that were in the middle of a relapse episode, even if no action were taken the MS patients would have improved, regardless. In other words, by design there is no way Zamboni's flawed "study" could have failed. Zamboni erroneously attributed the improvement to his agioplasty "treatment." But it is no mystery that the patients improved because they would have improved no matter what, even if they went untreated! I'm reasonably sure that truly scientific testing results will eventually bear out the flasehood of CCSVI treatment efficacy and disprove the purported merits of CCSVI as a cause of MS.

What this really comes down to is not Dr. Zamboni, or even CCSVI itself. This really is all about the whining constituents of the MS community that are looking for an easy, cheap, fast & painless cure for thier MS. However, such a cure does not exist. MS is not a vascular disease, it's a hematologically-rooted autoimmune disease (just like Rheumatoid Arthritis or Scleroderma). So there is only one clinically-lasting beneficial treatment for MS; it is a procedure that halts the body's underlying autoreactivity that effectively stops the immune system from attacking one's own body and restoring immune self-tolerance. And as of today only a hematopoietic stem cell transplant can do this.

And by the way. . . . for all you paranoid conspiracy theorists out there that think I'm against CCSVI because I'm somehow in cahoots with the drug companies. . . . WRONG!. . . like everyone else receiving a hematopoietic stem cell transplant I have been completely and 100% freed from ever having to again take any immunomodulatory drugs to treat my MS. After 15 years of use I'm now off all MS drug treatment since my stem cell transplant cure. In fact, if the conspiracy theorists were actually correct in their irrational assertion that somehow big pharma is trying to supress a cure for MS, then the pharmaceutical companies would be dead against a stem cell transplant as a cure (which I have seen absolutely no evidence of this) becuase it frees people from continued use of expensive immunomodulator drugs. Making a logical extension of this concept, it's not a conspiracy that is holding CCSVI treatment back as a cure. It's more fundamental. . . CCSVI treatment physically does not work as a cure. Bottom line. . . Even if some people with MS do have veins with ristricted flow patters, that does not mean that it causes MS. Correlation is not causation.

Now don't get me wrong. . . . . I wish that the medical community and researchers could find a quick & easy solution to cure MS. Unfortunately such an easy solution is not here yet (and perhaps never will be). I thank god that I had the opportunity to choose to be cured of MS with a stem cell transplant, hard & expensive as it was. At least I feel I worked for my cure. And that makes it all the more valuable to me.


From: Allen
Subject: re: CCSVI
Date: Friday, June 25, 2010

Hi George,

Thanks for your post on CCSVI. It's always good to hear from both sides. I just stumbled upon your blog and look forward to reading more about your stem cell procedure. I've read some vague accounts in the news so it will be good to get more in depth info.

I'm curious what your thoughts are on the only scientific study on CCSVI (at least that I'm aware of):

"CCSVI prevalence was 56.4 percent in MS subjects and 22.4 percent in healthy controls.

In this large MS cohort, the presence of CCSVI did suggest an association with disease progression"

I feel like there's a lack of evidence to disprove or prove CCSVI, and given this study it is probably something worth more research.


From: George Goss
Subject: re: CCSVI
Date: Friday, June 25, 2010

Hi Allen,

Thanks for your e-mail and insightful comments. I appreciate hearing from someone that can look at both sides of the issue without getting hostile.

And thanks for reading the blog. If you would like to read the beginning, it gives a fairly good summary of what the stem cell transplant cure is all about and overview of what I did. This is the first post (at that time I didn't know for certain that it would cure me. But it has worked out wonderfully for me and cured me, as it does for more than 80% of those undergoing the procedure.). . . . .

Also, your comments regarding CCSVI are very astute. I'm glad to see someone that looks at the information objectively instead of a visceral emotional and irrational reaction that many people in the MS community have. It's troubling to see people treat CCSVI as if it were curative dogma since nothing as such yet exists. (Not even a stem cell transplant.)

Regarding the subject of some correlation between CCSVI and MS. I think you are correct that there may indeed be some relationship between the two. However, the way I look at it it's a matter of "the dog wagging the tail," or "the tail wagging the dog." I believe that it is conceivably possible that there may be some factor of blood flow that is the result of an autoimmune disease, but unlikely to be a causative factor. Looking at the fundamental etiology, it is quite difficult for me to reconcile the already-established causality of autoimmunity for MS and the features of what CCVSI is purported to be by it's advocates.

It would be fantastic if I were wrong. But the already-existing data on autoimmunity as a cause of MS is so very much overwhelming, it's difficult to imagine that all those man-years and clinical trials already expended (and ongoing) to be proven wrong. If that did happen, it certainly would turn science on it's head.

Regardless, you have brought up great questions and it has made me think about this since so many people desire more detail (and actually "answers" that don't yet exist). I will enjoy to look into the specific details of the UB study to dig further. In fact, after I look at it more I think I will even give Dr. Robert Zivadinov at UB a call to ask him some questions myself.

I'll definitely let you know if/when I find out some more info that might be relevant.

Best regards,


Follow up comments by George Goss on June 26, 2010:

No need for me to dig into this any deeper. I read the study design, protocol and results. There is no doubt it was a properly conducted study. But by design the study does nothing to associate "causality" of MS via CCSVI. So all the study indicates is that more study is required. It provides no additional hope of a CCSVI cure beyond the unsubstantiated claims already made by Dr. Zamboni.

Bottom line of the study result summary. . . . . people with clinically definite MS are roughly twice as likely to have narrowed (or slightly restricted) jugular veins compared with people without MS. But the study did nothing to address the understanding or underlying reason of why this occurs (which is the additional study required). And also, why do 22% (a very large and significant number) of people in the study that have resistricted veins not also have MS? I go back to my consistent previous contention that it is more likely that CCSVI has a non-causative association with MS, and is not itself the cause.

So even if CCSVI as a cause of MS were proved correct, based on the results of this
trial only about half of all people with clinically definite MS could be cured. That is far lower than the 80%-85% of MS patients that have already been shown to be cured with a stem cell transplant. So which one is the cure?

Food for thought. . . . . there is a substantially stronger correlation between T-cell loading and MS disability progression than there is with CCSVI and disability progression (which is why immunomodulator drugs have a significantly positive impact at reducing MS progression). So if weighing these CCSVI study results in the most favorable light versus the pharmacological studies of immunomodulators, the preponderance of evidence still stacks up overwhelmingly in favor of MS being an immunological (autoimmune) disease.

Just so I'm not beating-around-the-bush. . . MS cannot be cured by CCSVI treatment, and the latest clinical trial does nothing to dissuade my thinking in this respect.

By the way. . . I'm all for more research on CCSVI. There is clearly some relationsip between MS and restricted jugulat vein(s). I'd really like to know why. More knowlege, not less is always better. It's just troubling to see so many people understandably looking for a remendy for thier MS and and then irrationally jumping on the CCSVI "cure" bandwagon with absolutely NO scientific evidence that it has any positive impact on MS, as is the case today.

From: Rose
Subject: Why say hoax?
Date: Monday, June 28, 2010, 2:19 PM


I came across your blog in my endless search for Internet knowledge and was drawn to your post because of your choice of words. Now, that may be why you used that word but I find it interesting that there are a few people (or perhaps more-I know I don't have all the info) out there that keep arguing against CCSVI calling it a hoax, more specifically to the treatment and its effectiveness. I think CCSVI is not a hoax but an expansion of previous ideas and research by many other people. Some of the research has not been connected to each other and I am unsure how much of it all that Zamboni et al have even reviewed. I do know that it is known in the vascular world that stenosis in the vasculature, anywhere in the body, is not good and needs to be corrected.

I have come across a lot of research and case studies done that points to a link between vascular stenosis and neurological damage. I do not argue for the MS-CCSVI causual link, I have a feeling it is more complex than a simple stenosis issue; but I do see a certain validity to the underlying vascular issues. Especially since so many interventional radiologists are now pulling blood clots from MSers veins.

Of course this raises the question, what was their diagnosis status? Mine is solidified by only 2 of the 3 requirements, I have no lesions. Does that make my diagnosis questionable? Unsure. But many MSers have been diagnosed based on less than what I have been. How many MSers truly have MS? Without perfectly strict rules, it is impossible to say. The McDonald Criteria for diagnosis have been changed over the years and are, well, a bit on the flexible side for diagnosing patients.

Getting back to the hoax issue, what about the diabetic and cancer patients that experience neurological damage symptoms when it is discovered they have developed clots or stenoses in their veins because of long term catheters used for their treatments. Once those veins were cleared, their neurological symptoms were alleviated. These issues are not hoaxes but then they are not linked to MS. (I have that research somewhere, just have to dig it up...if you are interested.)

There is a 2007 paper "The Differential Diagnosis of Multiple Sclerosis" (Rolak & Fleming) that lists as an option for partial diagnosis "Table 2. #11. Cerebrovascular disease" and in "Table 4. #2. Arteriovenous malformation." So here we have another potential for a vascular issue with neurological symptoms and an issue with diagnosis.

There is also the argument for or against the autoimmune part of MS. A 2004 paper "Multiple Sclerosis is not an autoimmune disease" (Chaudhuri & Behan) puts up a convincing argument against. But I am still on the fence as far as which it is or isn't but as new discoveries are made the more we will know.

This 1999 neurosurgery paper "Endovascular Recanalization with Balloon Angioplasty and Stenting of an Occluded Occipital Sinus for Treatment of Intreacranial Venous Hypertension: Technical Case Report" (Neurosurgery, April 1999, Vol. 44, Is. 4, ppg. 896-901) is an extreme case, but shows that such stenoses do cause neurological problems. Would it not be safe to say if such a stenosis were gradual, say over a period of years even decades they could also create such damage and symptoms?

Basically, why say hoax when it really is an issue of disease relationship. Perhaps Italy is right in separating CCSVI from MS? There is still so much to learn and discover in all of this.

I enjoyed reading your post, I hope my terribly longwinded response did not bore you too much.


From: George Goss
Date: June 29, 2010

Greetings Rosie,

Thank you for you message. All of your comments are lucid, relevant and make complete sense to me.

And first off. . . . thank you for highlighting my use of the word hoax. Now that I have thought about it the word got close to my intent, but was not precise enough. I have changed the blog title to reflect a more precise nomenclature. I use the word mythology because there is absolutely no curative data for CCSVI treatment of MS, but there seems to be so much irrational belief in it in it anyway. It really makes me wonder why would so many people put their faith into a procedure that has absolutely no demonstrated curative benefit when stem cell transplantation shows such good curative results?

And regarding your note of vascular causes of neorologic problems. I agree, I'm certain there are a great number a syndroms associated with vascular stenosis (such as diabetes). I just feel confident that MS is not one of them. And for one reason. . . . there is so much immunological clinical trial data developed so far that squarely puts autoimmunity in the spotlight as a cause (or "action," if you will) for MS. Combined with the dearth (non-existence, actually) of CCSVI causal data, this makes me defer to what has already been shown with "real" curative stem cell end-point data. CCSVI does not fall into that category whereas stem cell transplantation does. It appears to be a serious uphill battle if CCSVI is to displace the immunological model as the etiology for MS. And that means beating an 80%-85% cure rate that stem cell transplantation has already demonstrated in multiple scientifically clinical environments around the world.

Best regards,


From: Rose
Subject: CCSVI
To: "George Goss"
Date: Wednesday, June 30, 2010, 8:53 PM

You make a good point on the etiology issue. I am pretty convinced that there is just not enough data to put CCSVI at the top of the causal list for MS. Or even in the top ten; but that remains to be proven definitively.

I think stem cell therapy is a great option, it just has a long way to go and a huge conservative religious right to overcome here in the US. Mind you, I am not one of those people. I have found that no matter how much you argue that stem cells can come from other sources that are not embryonic, many of these individuals will not allow such things to sway their opposition. They believe that any stem cell research can create a path to embryonic...and well, the argument has no end and I usually just find a reason to get out of the conversation. :)

I must also say I have an issue with the term "junk science" for Zamboni's work; but perhaps that is how all different opinions and out-of-the-box research is described until there can be a significant amount of verifiable corroborating evidence. What about the Australian pair that discovered a bacterium as the source of peptic ulcers?

"His work was not received enthusiastically. In Marshall's words, "When I was criticized by gastroenterologists, I knew that they were mostly making their living doing endoscopies on ulcer patients. So I'm going to show you guys. A few years from now you'll be saying, 'Hey! Where did all those endoscopies go to?' And it will be because I was treating ulcers with antibiotics."

Should be an interesting next few years of research for and against CCSVI.

I wonder, how do you feel about all the hubbub in regards to MSers who have had the angioplasty and are experiencing significant changes to their MS symptoms? Do you also feel that the personal experiences are a result of the placebo effect? If so, what does that say about our MS symptoms that they can be fixed with a placebo and not the drugs that we take daily? Or is it all just smoke and mirrors?

I have to admit, I am quite amused by the next stage in BNAC's study involving the 'fake' angioplasties they are reporting they will include in their study. How exactly do you fake a catheter going through someone's body and inflating a balloon in their neck? We have heard, and see, so many accounts of the angioplasty procedure that we are completely prepared in what to expect. I think a medical procedure such as this one cannot possibly be faked. We shall see what happens next.

On another note, my father is from Chile and he tells me they are doing great things down there with stem cell research and treatments. This he learns from his sister who still lives there.

How exactly did you receive stem cell therapy? And please forgive me if you have posted details in your blog, feel free to let me know and I will dig deeper into your posts.


From: George Goss
Subject: CCSVI
To: Rose
Date: Thursday, July 1, 2010, 11:04 AM

Hi Rosie,

Having a discussion with you is nice because you have so many great points. I hope you won’t mind terribly much if I bounce some of my observations and opinions off you based upon your comments. . . . . . .

- Stem cell transplant therapy, just like all medical therapies, does have a way to go before it is finally accepted as putative. However, it's just now in the final stages of FDA phase II trials with phase III trials planned. Based on an extrapolation of this schedule, I believe it's entirely possible that a stem cell transplant will become standard curative therapy for MS within ten years. At that point insurance should cover the cost of the (cure) procedure. For now, it has to be paid out-of-pocket. And unfortunately it's not an inexpensive procedure.

- Interesting that you mention embryonic stem cells and the tumultuous controversy surrounding them. Other people also brought up this subject when I told them I was getting a stem cell transplant. But actually, with an autologous stem cell transplant the patient is only getting their own stem cells back. The stem cells do not come from another donor or any embryos. So there's not a lot of controversy here. Interesting that to my knowledge, there is not a single disease currently curable by embryonic stem cells.

- I believe that I appropriately use the term "junk science" to describe Zamboni's original study. The "study" was designed and executed by Zamboni so that it was impossible to fail (meaning that the results are meaningless). That is not science. And in the words of the European science establishment I also believe it was completely "unethical."

- And I'm also familiar with the discovery of Helicobacter pylori as a cause of gastric ulcers. Remarkable work done by the original investigators and my hat's off to them for their perseverance in the face of then-dogma. But even though they were going against the putative beliefs of the time, I'm not aware of anyone calling their discovery junk science. In fact, it is their following of sound scientific principles that eventually led to the acceptance of bacteria-as-a-cause of gastric ulcers. But I think Zamboni's theory and the theory resulting in the H. pylori cure is not comparable. Making Zamboni a martyr does not make CCSVI more real as a cause (or cure) of MS.

- I am also looking forward to CCSVI study results over time. Even though I think it will never result in a cure, I am interested in knowing more about CCSVI's association with co morbidity factors.

- If people with MS seek and receive CCSVI treatment, that's OK with me since it's an individual decision. However, I think any improvement is more likely a placebo effect, than otherwise. And yes, the placebo effect is real, but it's not a cure because it's not lasting. Most people with MS will continue to degrade over time, with or without CCSVI treatment. For those that do get CCSVI treatment, that is setting a lot of people up for some serious disappointment (and waste of their money).

- So far today only a stem cell transplant (also sometimes called a bone marrow transplant) has consistently shown greater than an 80% cure rate for MS (and for several other autoimmune diseases, as well). Any placebo effect has been excluded from those studies. All the study info is public for review. You can see some of the data on my stem cell references page:

- There are two major types of stem cell therapies that are vastly different from each other. The only one that will cure MS is by first harvesting stem cells from your own body and then destroying the bone marrow with high dose chemotherapy. Following this your own stem cells are then re-infused back into your body and then this results in re-growing the bone marrow and having a "reset" immune system that no longer attacks your body. This is what I did and for me it worked fantastically well. I'm definitely cured. However, the other form of stem cell therapy takes stem cells from your own body, and then without destroying the bone marrow the stem cells are re-infused back into your body. This type of "stem cell therapy" is worthless and has no demonstrated clinical benefit at all. There are many companies all over the world offering this treatment to patients just to get money. Sad, but many desperate people go for this treatment looking for a cure, just the same reason I believe people get CCSVI treatment. They hope it will cure them even though there is zero evidence it has any long term benefit.

- A stem cell transplant (the type I received) is a hard procedure (makes you quite sick for a week). But it's not an impossible procedure to endure. Also, it's quite expensive. So how much is a cure for
MS worth? That's a personal decision for each individual.

- You can find out about my stem cell transplant procedure by reading my overview page here:

I'm not pushing this stem cell transplant on anyone even though it is the only cure available today. If you have any questions or comments, I'm always glad to receive your e-mail.

Thanks & regards,

- George