Thursday, October 21, 2010

10 month Report - Meeting my neurologist to confirm the cure

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

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

Onto something with substance. . . . .

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

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

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


  1. I'm sorry that someone has made that accusation that you are doing this for money. This is obviously someone who dosen't have MS. They just don't understand that when you experience MS, and then you are "cured" from it, you just want to share that and help others. I'm happy that you are sharing this information, there are a lot of people who can benefit from this!

  2. Thanks very much for verbalizing the appreciated sentiments, Marc. I know that there is a lot less altruism around these days and I only want to share the experience in case someone else can benefit from it. The only thing I get in return is the satisfaction of helping to inform if someone chooses to listen. Very best regards to you!