This Is MS Multiple Sclerosis Community: Knowledge & Support

Sorry, I missed the 2nd part of your question. George would be best qualified to answer this. From what I have learned, HSCT which is high dose chemotherapy followed by stem cell transplantation is a standard and proven procedure that has been applied for more than 10 years for treating leukemia patients. In recent years clinical trials have been conducted to test the safety and efficacy of this procedure for a range of auto Immune diseases, one of which MS. The trials are in phase 3 now with impressive and replicable curative results. For detailed information I would visit George's blog where you can find all the science behind HSCT.

I keep a rolling update of Asher you can read in the following link. He's a true inspiration.

Asher's page. . . .

http://themscure.blogspot.com/2011/06/p ... cohen.html

BTW. . . stem cell "transplantation" is not ten years off. We're now 20 years into treatment of MS. Both Asher and I were secondary progressive and is a completely viable treatment that stops the progression of MS in the vast majority of treated patients. Asher is correct that it is currently in final FDA phase III trials. So it is now inevitable that it will eventually become standard (option) treatment for MS. Perhaps an opportunity to educate the doctors that are spreading misinformation?

Details of the science, treatment and status. . . .

http://themscure.blogspot.com/2010/06/s ... rence.html

I saw a thing by Giles Elrington, who is an MS expert and dr, and he says the same "unproven" and "years away" stuff too. I wonder why such experts discount a treatment that seems to have been proven as an option?

_________________
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?

Good point, Shucks. My own thinking about this subject is the same as I think about virtually all neurologists around the world (who are considered the "experts" on MS). These types of doctors are not educated, trained or experienced in stem cell transplantation, and by educational & clinical background are woefully ignorant of the curative effects of stem cell transplantation. However. . . ask an immunologist or hematologist if these results can be acheived via treatment of the "immune system," and you are likely to get a different answer. I was amazed that ALL the (non-neururology) oncology and hematology doctors in Heidelberg correctly agreed that there was very good theoretical basis for doing HSCT for MS and were fully supportive of me through my decision to receive HSCT for my MS. In the end they were all proven correct now that my MS disease activity is (proven!) 100% stopped. But the neurologists to me seem to be somewhat indignant about it.

Neururologists know a whole lot about nerves, but they know virtually nothing about the hematologic-origins of autoimmune disorders (such as MS) and the underlying source of the disease operating process which comes from the bone marrow (in the form of auto-reactive immune cells). That is the "best case" view. The "worst case" view is that neurologists make a living off treating people with chronic adminstration of drugs that offer no hope of a cure and have no specific interest in curing the disease. Doing so keeps them in business and the paychecks coming.

I really wish that in the future neurologists would just diagnose the disease and then "get out of the way" and let the real experts (hematologists & immunologists) cure MS with immune system ablation and reconstitution.

2nd day in a row: I wake up in the morning, have breakfast, fall a sleep and wake up for lunch, go for a short walk and fall a sleep again until late afternoon. The high dose chemo turns out to be a major system disruption and my body is working over hours to repair the temporary damage. The bright side is that when I'm awake, I'm awake. Feels great!

can you tell any progress in recovering from the treatment yet? Sleeping less or feeling better yet?

_________________
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?

Hi Shucks, the answer is a capital YES. Still have a nap during day time, but the need for sleep is greatly reduced. The fun part of it is the quality of my being when I'm awake. It is nothing like what I remember from the pre HSCT period. Yesterday I even felt fit enough to do my tax return. Nothing to write home about under normal circumstances, but now I actualiy enjoyed it. Now I am sure you will understand my caution in reporting treatment related improvements. It's early days and besides I guess I am scared of disappointment later on and placebo playing tricks on me. With this in mind I'll pull together some courage: 1. No MS hug; 2. No needles and pins, and; 3. Greatly reduced urgency and I've become completely regular. Take care, Asher, 5 weeks post transplantation.

We are SO HAPPY FOR YOU ASHER ,wish you the best say hi to the family for us.
Sindy and MR G

Thank you sinful for your heart warming wishes. Asher

Oh, the speller, I meant sindy.

6 weeks post transplantation: Still recuperating from the chemo. My MS afflicted right leg and arm are still much weaker than they were before the chemo. But this was to be expected and I am clearly getting stronger every day. I can do with one nap a day and I can now walk about at home unaided. There are two new things I have noticed:

- Before the treatment I often felt dizzy and unstable while taking a shower. Although my right leg is very weak, I can now take a shower and remain 100% stable.
- Optic Neuritis: Before treatment I had a mild form of Optic Neuritis in my right eye. I did not suffer from double vision but there was always a very subtle internal eye pressure and subtle blurring that went with it. Today I became aware that this subtle Optic Neuritis is all but gone.

Now I am not drawing any definitive conclusions. Just reporting the 'what is'. should any of these symptoms return, for what ever reason, I will report that too.

Have a lovely day (or evening), Asher

So glad to hear things are on-track, Asher!

I also find your symptomatic descriptions & report very interesting. I know it's better to be conservative with the symptom-change description (especially so soon following treatment), but I'd bet these are real improvements you are experiencing. The reason I think so is because typically damage in the brain inside the skull is the first to resolve following treatment, and then damage in the spinal collumn takes a little longer to respond to the HSCT. So both of the symptoms you describe (vision and ataxia/balance) are both functions inside your brain. So it is extremely encouraging to hear about this and is consistent with my own experience in which I had a few brain-related symptoms resolve almost immediately following HSCT (ataxia, vertigo, resting-fatigue and sensitivity to heat). Now that your immune system has been rendered antigen-naive & self-tolerant, I would bet on the excellent probability you will likely not see or experience any worsening going forward. Should mean that only improvement should be on the horizon. I'm really hoping so since it is so much within the realm of possibility.

Just FYI. . . here is my most recent report of symptomatic status & improvement.

http://themscure.blogspot.com/2011/06/1 ... tatus.html

This won't specifically apply to your case (no two cases are directly comparable) but because my result is "typical," you may also go down a similar path. I'll be sending the powerful thoughts of good fortune your way!

Please give my regards to your wonderful family.

- George

Thank you George.

Thank you George.

Thank You George and Asher, You are doing something great, at least for me- giving some hope!