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.