Heidelberg Revisited

18 months following my HSCT procedure

This page is a continuation of the previous posting of my trip this past week to Heidelberg to visit Asher Cohen currently undergoing the same HSCT procedure for his own MS. While visiting Asher in his room the morning prior to his stem cell infusion, Prof. Ho (Heidelberg stem cell transplantation department head) came by, making his usual hospital patient in-room visits with the usual entourage of other staff doctors to personally check on the status of each patient. I had a chance to once again re-connect with Prof. Ho and Prof. Egerer when we met up in Asher's room. You may recall from one of my previous blog postings that Prof. Ho and I have somewhat of an indirect connection. He was previously head of the stem cell / bone marrow transplantation center at the University of California at San Diego (UCSD), my home town and alma mater. It was so great to see him again and great to catch up with he and Prof. Egerer (both remarkably wonderful doctors) pictured together here in this photo (click to enlarge):


I was happy to share with them that the HSCT treatment they provided to me was a complete success, 100% stopping my underlying MS disease activity and letting them know that since being treated my disability status has improved by 40%. Something otherwise absolutely impossible to achieve with any other therapy of any kind anywhere. (Admittedly each individual case result may be different.) I congratulated the good doctors on their "buy-in" and support of treating (and curing) MS patients such as myself of underlying MS disease activity via HSCT. They have my undying respect and eternal gratitude!

I also had to chance to stop by the stem cell transplantation coordinator office of Dr. Ulrike Klein to say hello and have a brief chat. Dr. Klein has replaced Dr. Thalheimer who was promoted to another position within the hospital (I'm sorry that I didn't have an opportunity to say hello to Dr. Thalheimer. Such a very nice man.) I find Dr. Klein an especially helpful person and I'm certain her conscientious attention to detail will help make the application process for those with MS seeking HSCT treaatment as smooth as possible.

Here is Dr. Klein as pictured from the hospital website (sorry I didn't get my own picture).


She confirmed with me that she is the main point contact for anyone with MS that would like to apply for HSCT treatment. She will then coordinate with other departments (mainly neurology for approval and the international business office for financial arrangements) to move the applicant through the approval and planning process as I describe in an earlier blog post:

If anyone with MS is interested in actually receiving the treatment in Heidelberg (I have absolutely no financial interest in this), then I would suggest to contact Heidelberg University Hospital directly. I originally worked with Dr. Markus Thalheimer, as he was the transplantation coordinator at that time. However, he has since moved on to a new position within the hospital and Dr. Ulrike Klein has now taken over this coordination role. So she will be the necessary person to contact. Her e-mail address as follows:Ulrike.Klein2@med.uni-heidelberg.de

This is an e-mail response she has recently provided to another person seeking HSCT treatment for MS:

Due to changes in responsibilities I'm getting in contact with you instead of Dr. Thalheimer. In the future I will coordinate the process. In cooperation with our neurologist we will carefully check your medical status. Therefore the neurologist asked us to request the following information from you:

- to fill out the attached questionnaire

- to send us a CD with an actual MRI and

- the latest physician's letter [medical history record] from your neurologist with information about [your current] therapy, especially the current medication.

Following that we will review the documents and decide about the indication for ABSCT [HSCT].

Please send the documents to the following address:

Universitätsklinikum Heidelberg
Medizinische Klinik V
Hämatologie/Onkologie
Dr. Ulrike Klein
Im Neuenheimer Feld 410
69120 Heidelberg, Germany

All financial procedures will be coordinated through our International Office once the medical questions have been clarified.

If you have further questions, do not hesitate to contact me (ulrike.klein2@med.uni-heidelberg.de)

Sincerely U. Klein

This is Dr. Klein's hospital website info near the bottom of this page:http://www.klinikum.uni-heidelberg.de/Koordination-und-Verwaltung.119960.0.html

While I was walking the hallways I also bumped into Dr. Storch-Hagenlocher, the neurologist that initially examined me 18 months prior, as she was the person that was tasked to approve me for HSCT treatment in Heidelberg. I think you might recall from an earlier blog posting that since I was the first MS patient in recent memory (at that time) to seek HSCT in Heidelberg, they had no formal procedure or criteria in place to approve or disapprove me for the transplantation. So when I first met with Dr. Storch-Hagenlocher the meeting was rather terse in that she got right to the point and clearly expressed her opinion that she thought the procedure to be completely experimental and that I should instead try alternate FDA-approved drug therapies. I disagreed with her position that HSCT is not "entirely" experimental. . . especially now that more than 600 people with MS worldwide have undergone HSCT and the procedure as a treatment for MS is currently in final phase III clinical trial. The overwhelming majority of HSCT-treated MS patients have shown consistent enduring positive curative results. Currently there is no drug therapy available anywhere in the world that has even a remote possibility of achieving what HSCT is capable of accomplishing nor achieving what has already been demonstrated in the clinical trials. I definitely walked out of that initial meeting 18 months ago understanding her opinion that she did not favor the idea of HSCT for treatment of MS. An opinion which appears to me to be consistent with nearly every other neurologist in the world (which is understandable since neurologists are not trained nor experienced in stem cell transplantation and are usually not educated as immunologists and hematologists are regarding the curative effects of HSCT on hematologically-rooted autoimmune disorders such as MS).

Now 18 months post-transplantation during this brief discussion in the hallway I had the opportunity to share with Dr. Storch-Hagenlocher that the HSCT worked fabulously well for me as my MS disease activity & progression is not only completely 100% stopped (and I no longer take any MS drugs), but also that my physical disability (as measured by EDSS) has improved 40% due to the procedure! A result that is impossible to achieve with any other therapy available today, especially for an SPMS case such as my own. As I spoke with her she looked relatively unmoved by my comments, maintaining a dispassionate demeanor while politely listening to what I had to say. (In truth, a little bit I had to resist the urge to say "I told you so!" But of course I wouldn't be so rude to do that.)

In the end Dr. Storch-Hagenlocher didn't stop my treatment, allowing me to proceed with HSCT. Everything worked out with my transplantation as well, or better than I had hoped and dreamed. For that I and my family sincerely thank you Dr. Storch-Hagenlocher. My life today is better by a huge margin that words alone cannot describe because you allowed me to receive HSCT. In this situation everyone was a winner. Thank you again.

I didn't have time to snap a photo of her so here is her stock photo from the Hospital website (click to enlarge).


A big highlight of the hands-on treatment I had while hospitalized 18 months ago was having Dr. McClanahan as the main treating physician (there were other good doctors, too) in the Ackermann Ward. Dr. McClanahan is such a superb doctor and wonderful person that it would be impossible to say anything at all negative about her. She has recently accepted a rather prestigious position at a hospital facility in London which specializes in oncology treatment. Her last day working in Heidelberg will be at the end of this month (June, 2011). I was fortunate to meet up with her and her husband to wish her the best of luck and good success in her new endeavor (although I think London is getting the better end of the deal). Picture here of Dr. McClanahan and her fantastically nice husband Eric. (Click to enlarge):


And then the following day I had an opportunity meet with Sandra Kraeker in the Hospital cafeteria. You might remember Sandra as the main medical technician that performed the bulk of my apheresis stem cell collection procedure (together with Frau Renate and Dr. Hundemer). It was great to catch up on all that has transpired since my last time in Heidelberg. (Click to enlarge):


In the course of meeting with Sandra, we walked down to the apheresis unit to see who else was around. Previously Dr. Hundemer had run the unit but has since transitioned out of stem cell collection and will be assuming a new role in the hospital. However, I was happy to see the familiar face of Dr. Heilig that has now taken over responsibility for the apheresis stem cell collection unit, pictured here (click to enlarge):

Dr. Heilig was previously a regular physician in the Ackermann ward and I saw him nearly every day during my stay there. In fact, he was the physician that inserted my very final cannula catheter into my hand (for IV infusions) during my hospital stay. I had so many needles poked into my forearms during my hospital stay that near the end of my stay I absolutely dreaded having them inserted because it was somewhat painful (which is normal). But the last one that Dr. Heilig inserted was completely painless because he took such good care to do it so carefully. This may seem like a small and simple thing, but even to this day I have not forgotten! So in addition to Dr. Heilig's great medical & technical capabilities, he is also a wonderfully caring clinician. Thank you so much Dr. Heilig. Any future MS patient undergoing HSCT will be very happy to receive care in your department. Beers on me next time I visit!

And it was also great to see frau Renate (the world's top #1 experienced peripheral blood stem cell (PBSC) collection professional!). Photo of the current apheresis clan. Anyone would be lucky to be treated by this group. (Click to enlarge):


Later that same day I did have a chance to bump in to Dr. Hundemer in the hallway of the Ackermann ward. Unfortunately it was only a brief chat and I was unable to capture a picture. Here is his stock hospital photo from the website. I never forget that smiling face. Great doctor and great guy. (Click to enlarge):


And while I was waiting to meet Dr. Klein, I also had the good fortune to bump into these two fine doctors. Pictured on the right is Dr. Raab that was my attending physician at the time of my treatment. (He is the one that mapped out my entire BEAM protocol treatment schedule.) Pictured on the left is Dr. Neben that I first met during my own HSCT 18 months ago. Dr. Neben is currently the attending physician for Asher Cohen now undergoing the same procedure that I had. Both are exceptionally good doctors with the finest experienced credentials. I wonder if they fully comprehend that in addition to often saving lives of people with cancer, they have made history by treating MS patients "outside" of a clinical trial? I'm sure that over time the world will reveal to them the profound appreciation they both deserve. (Click to enlarge):


Pictured in the following photo is Dr. Emilian Snarski. Yes he looks like quite a young man. But his youthful appearance beguiles his true accomplishments and capabilities. He and I hooked up some time ago after he read my blog following my initial treatment. He was working in the Medical University of Warsaw (top #1 facility in all of Poland) doing fascinating & groundbreaking work in treatment and curative therapy of the autoimmune disease of type I diabetes. He has since accepted a position in Dr. Ho's stem cell transplantation group working together with Prof Dreger in the allogeneic stem cell transplantation ward. His recently-new position in Heidelberg allowed us the opportunity to finally meet face-to-face. Both a very capable medical professional and an exceptionally nice person, I personally would love to see him become more involved (in a substantial way) in the use of HSCT for the treatment of MS (and perhaps other autoimmune diseases, as well). [Note added May, 2012: Dr. Snarski has since left Heidelberg and returned to Poland where he currently manages an allogenic donor stem cell operation in Warsaw. I am really looking forward to meeting with him again in the future either in Poland, or here in California the next time he makes it through the area.] (Click to enlarge):


Here is Dr. Snarski's own blog that I find interesting, relevant and very well written!:

http://emiliansnarski.wordpress.com/about/


Probably the most important "professional" meting I had in Heidelberg was with the distinguished Prof. Platten that heads up the Hospital Neurology department. He was kind enough to take an hour out of his busy schedule to sit down with me so that I could understand his thinking about the basic inclusion/exclusion criteria for those MS patients seeking HSCT in Heidelberg as curative therapy. This is a critically important topic because Prof. Platten is the gate-keeper and key approving decision-maker for any MS patient seeking HSCT treatment in Heidelberg. If you have MS and want to receive HSCT in Heidelberg, you have to make it past Prof. Platten first.

Prof. Platten is not just your run-of-the-mill neurologist (the type of doctors that usually just immediately dismiss HSCT treatment for MS out of ignorance). He has a deep academic and clinical background that includes neuro-radiology and neuro-oncology. This makes his perspective of the treatment more broad and diverse. Generally a good attribute. Although he and I likely don't agree on 100% of every point on this topic of HSCT for MS, I found his thinking & approach to HSCT for MS as basically logical and rational. Critical items in my book necessary for the gatekeeper of this treatment to have. This will make a huge difference to people that are/will seek this treatment in Heidelberg which you can learn about in the next posting I publish. (Click to enlarge):


And here is Prof. Platten's info on this hospital web page:

http://www.klinikum.uni-heidelberg.de/Michael-Platten.109149.0.html

OK. . . last item that I have been dying to get in. . . . . the last time I was in Heidelberg I didn't have a lot of time to see or do much in the way of enjoyable outside tourist activities (even though I enjoyed the inside hospital activities). While I was hospitalized both Yuko and I had contact with Gabriele and Thomas, good regionally-local German friends of my extended (cousins) family. We had not previously met them but they followed my blog daily as I progressed through every step of the treatment and they sent very friendly & uplifting e-mail messages that were VERY helpful in lifting my spirits while I felt ill from the chemotherapy. In the end they even offered to drive us to the Frankfurt airport. They are such wonderful people!

So for this trip at the end I had the opportunity to go to Mainz and stay with them for a couple days before leaving to return to California. It was so enjoyable to spend time together with them. And they were sooooo nice to take me on a boat cruise down the Rhine river to see all the old historic castles of the area. We also had dinner together at one of the most historically celebrated castles in the region that is more than one thousand years old! Yuko & Riki and I can't wait until we next get together, either in Germany again or in the Bay Area in California. These are true friends for life! Thomas and Gabriele pictured here in Mainz. (Click to enlarge):

Jack's Jump

“Success is 10 percent inspiration and 90 percent perspiration.”

- Thomas Edison

This is the saying that I thought of when thinking about my good friend Jack. He and I used to work together in Silicon Valley. He has a rather impressive background of academic achievement having studied chemical engineering at both Cornell and Caltech. He is one of the best semiconductor process technologists that I know, and a good friend.

Unfortunately life threw Jack an undeserved curve ball and was zapped with a rapidly progressing form of Primary Progressive MS. So on short notice the details of his life's plans changed to something different than what he originally had in mind. Regardless, the biggest thing about Jack's kick-ass attitude that I admire so much is that he hasn't let MS beat him. His attitude is a good example that should be (and is) an inspiration to many others. So when some other people faced with the same circumstances may begin to lose an appreciation for life, take a look at one of Jack's recent adventures and remember that no matter how difficult the trial, there is enjoyment & appreciation of life to be had if you make the decision to grab it.

I hope you will enjoy the following video as much as I have which requires no further explanation. . . . .

http://www.youtube.com/watch?v=mK_IfzBh08I

And an addendum video. . . .

http://vimeo.com/smoothsaling/skydive

.

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:
  
  http://www.youtube.com/watch?v=msYTOSo4jZo&feature=channel

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:

http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html

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:

ActiveMSer's

http://www.activemsers.org/

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:

http://www.youtube.com/watch?v=6VTu--htcMI

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. . . . .

http://my-end-to-ms.blogspot.com/

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

http://www.lisashope.com/index.html

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:

http://www.youtube.com/watch?v=jFQr2eqm3Cg

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:

http://www.mult-sclerosis.org/craigsstory.html

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. . . . . .

Craig

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. . .

http://www.freak-search.com/en/thread/1830528/recovery_from_autologous_stem_cell_transplant_xxv_prepping_for_ampyra

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
http://www.medicalnewstoday.com/articles/137238.php

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.

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!

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
http://www.nhs.uk/news/2009/01January/Pages/StemcelltreatmentforMS.aspx

"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:

http://www.permanente.net/homepage/doctor/daleyamashita/

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
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2094895/

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):

From: DALE TETSUO YAMASHITA MD
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 -----

From: GOSS,GEORGE J
Sent: 8/25/2010 10:29 AM
To: Office of DALE TETSUO YAMASHITA MD
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,

George

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. . .

http://www.youtube.com/watch?v=msYTOSo4jZo&feature=channel

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.