This Is MS Multiple Sclerosis Community: Knowledge & Support

Although a tough (but not impossible) procedure to endure, Hematopoietic Stem Cell Transplantation (HSCT) will cure many people with MS as I feel it did for me. The good news is that is is not necessary to be included in a clinical trial to receive treatment. I wrote all about it in my blog. I'm nearing one year since I was cured in December of 2009. . . . . .

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

Thanks for the post but there is a long way to go before calling any type of stem cell treatment a cure.

HI George thanks for posting infomations on HSCT stemcell treatment in germany. please let us know the clinic details in germany.
regards
seeva

Hi Seeva,

Please keep in mind that I am not pushing the specific facility that I was treated. I'm sure there are other medical facilities around the world that can & will also perform the procedure for people with MS. I just happen to have had a very good experience and received first-class care with the location I went which is Heidelberg University Hospital (they are Europe's top cancer research & treatment center and they do over 300 stem cell tranplants a year for cancerous conditions, hence they are extremely experienced in safely performing HSCT). Here's a Wikipedia description that I think has no exaggerations:

http://en.wikipedia.org/wiki/University ... Heidelberg

I have provided some info specific to my own treatment on this blog page:

http://themscure.blogspot.com/2010/02/l ... s-day.html

And I ended the posting with this info. . . . . .

Also, if anyone with MS is interested in actually receiving the treatment (I have absolutely no financial interest in this), then I would suggest to contact Dr. Markus Thalheimer [he is the stem cell transplantation coordinator] be sure to mention my name and say 'hello' to him for me). Keep in mind that I received "BEAM protocol":

Markus.Thalheimer@med.uni-heidelberg.de

I would love to know if you actually do make contact with Dr. Thalheimer. Let me know if I can provide more info beyond what I have already document in my blog.

Best regards,

George Goss

For what it's worth, here's a recent Pubmed abstract reviewing ASCT results for MS patients:


PATU8 Analysis of outcomes of high-dose immunosuppressive therapy with autologous stem cell transplantation in 156 patients with multiple sclerosis.

J Neurol Neurosurg Psychiatry. 2010 Nov;81(11):e26.
Novik V, Kuznetsov AN, Kurbatova KA, Kruglina RV, Ionova TI, Gorodokin GV, Fedorenko DA, Melnichenko VY.

During the last decade high-dose immunosuppressive therapy with autologous haematopoietic stem cell transplantation (HDIT+ASCT) has been used with increasing frequency as a therapeutic option for MS patients. We aimed to study clinical outcomes in patients with different MS types after HDIT+ASCT.

156 MS patients (secondary progressive, 54; primary progressive, 28; progressive relapsing, 5; relapsing-remitting, 69) were included in this study (mean age, 33.0; male/female, 63/93). Median EDSS at base-line, 4.0. Median follow-up duration, 20.6 months (range 6-126). Neurological evaluation was performed at baseline, at discharge, at 3, 6, 9, 12 months, and every 6 months thereafter.

Transplantation procedure was well tolerated by the patients with no transplant-related deaths. The efficacy analysis was performed in 101 patients at 6 months post-transplant: 48 patients (48%) achieved an objective improvement of neurological symptoms; 52 (51%) disease stabilisation; 1 patient (1%) progressed. At long-term follow-up (median, 27.5 months) clinical response was classified as improvement in 41 (62%); stabilization in 20 (30%); progression in 5 (8%) patients. No active, new or enlarging lesions were registered in patients without disease progression.

HDIT+ASCT appears to be a safe and effective treatment for MS. Further studies should be done to establish the best timing for transplantation and to validate conditioning regimens.

http://www.ncbi.nlm.nih.gov/pubmed/20972027

Thanks for finding and posting that, Dignan. I had not previously seen this specific paper which is consistent with my understanding based on the dozens of other scientific papers I have read of individual studies.

My apologies in advance for being redundant on summary. . . .

Population as a whole when grouping of all phases of MS (range including those from relapsing to those progressive ) is better than 80% "stopping" of disease and better than 60% "improvement" of existing symptoms. Deaths are few (or none) with the updated treatment protocols that exclude the use of TBI (which is now known to not improve curative probability).

However, when ASCT is used early in the course of the disease cycle (redsitricted to only active lesion RRMS cases), the "stopping" of disease is near 100% and the "improvement" of symptoms is better than 80%.

Stem cells 'reverse' MS
http://www.nhs.uk/news/2009/01January/P ... forMS.aspx

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

So the moral of the story is, although counterintuitive, it is better to have the procedure done early in the course of the disease before it gets very bad or turns progressive. But it's also difficult to imagine people wanting to undergo such a complex procedure when their disease may not be so obviously bad.

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Completely agreed, Lyon. You make excellent points.

I'm glad I braved the (stem cell transplantation) procedure that has completely stopped my disease and has resulted in a slow & gradual reversal of my already-existing symptoms. However, I wonder how surprised & dismayed I might become if in the future a simpler and easier way is found to accomplish the same thing. I suspect that some people "might" regret having the (uncomfortable & expensive) stem cell transplant procedure to cure their MS if a less-uncomfortable way is found to accomplish the same result. But I guess that because nothing else (yet) exits, I should be happy. As of now, I'm still sitting quite satisfied.

How expensive is this, George?

Hi Claire,

Unfortunately it's not an inexpensive procedure. I'm sure the cost will depend upon the specific facility that will perform the procedure. My own procedure cost approximately 55,000 Euros plus travel and housing costs in Heidelberg, Germany (approximately and extra $10-15K). All together still significantly cheaper (less than half the price) as compared to the same procedure performed in the United States.

I chose Heidelberg because of the scientific & medical excellence. In the end I was very happy with the quality of my treatment and the very nice way I was treated through the process (they treated me like a human being and not just like a machine). I thought it was world class care.

However, in case I was unable to receive care in Germany my backup plan was to go to India to have the procedure performed. I contacted the Apollo Hospital network and they quoted me approximately USD$40,000 to have the procedure in Chennai, India. But in the end Heidelberg accepted me and I was happy to have received the treatment there.

I know this is quite expensive. But considering the complexity of the procedure I wanted to reduce the treatment risk as much as reasonably possible. (For me, I had no "unexpected" side effects and came through the procedure just fine). So I decided not to cheap-out and so went to Germany. I'm glad I did, even though I have no direct comparison with any other facility.

Please don't just accept my opinion of treatment facility on blind faith. I suggest that for a procedure like this your own research will be quite beneficial.

All the details are in my blog. . .

http://themscure.blogspot.com/

Best of luck to you!

- George

Any idea why/if HSCT is more effective than Revimmune? (I truly pray both methods are effective).

From what I have learned I believe both are effective treatments but that HSCT shows superior efficacy for the best clinical outcomes compared with single-agent therapies (such as cyclophosphamide (Revimmune)). The reason is because although Revimmune purges T-cells, it does not sufficiently act to correct the body's underlying defective autoreactivity that HSCT does.

I think Dr. Richard Burt (probably top immunologist in this field to treat autoimmune diseases in the US) says it fairly clearly in the first 45 seconds of this video. . . .

http://www.youtube.com/watch?v=msYTOSo4 ... re=channel

But on the positive side. . . Revimmune has nowhere near the acute side effects as seen in myeloablative & lymphoablative HSCT therapy.

Thank you George. You were so nice to reply so fast.
I did watch that video repeatedly but did not see anything comparing revimmune type treatment to HSCT, but I did enjoy the video.

Sorry it took me so long to thank you. I just kept watching videos.

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