Stem cells and primary progressive MS

Discuss stem cells, adult and embryonic, and their therapeutic potential for MS here.

Re: Stem cells and primary progressive MS

Postby HUD45 » Tue Nov 15, 2011 1:24 pm

Hi again Brad. Thanksgiving day will be my 3 month mark from my stem cell " birthday". The fatigue from the protocol is starting to get much better, however I continue to experience a great deal of leg spasticity. I am not letting it slow me down though as I am staying very active and spend a great deal of time outdoors. I have not had the MSC infusion and have not made a final decision when and if I will decide to do so. I am in communication with another patient undergoing HSCT in Tel Aviv, and it will be interesting to learn her progress in the future as well. My hair is starting to come back now but it was kinda nice not to have to shave for a while.

I sent George Goss some pics of my trip a while back and he said he will post them on his blog in the future. No rush George.

So, bottom line I am doing ok for now but hope to be even better in 6-9 more months. I continue to be very glad I had the procedure but time will tell.......HUD
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Re: Stem cells and primary progressive MS

Postby bspotts1 » Wed Nov 16, 2011 9:50 am

Hi HUD,

If you wouldn't mind a few more questions...I just want to be clear in my mind about your procedure and to be sure I am using the correct terms. If I am correct, you did a hemotopoietic stem cell transplant (AHSCT) after undergoing non-myeloablative chemo...a procedure very similar to Dr. Burt's clinical trial??? Similar to George's procedure but using a more gentle chemo so that you will not need to be reimmunized??? Do you know your EDSS score prior to the procedure? I'm also curious about your age and date of diagnosis? Are you PPMS?

Sorry for all the questions...I'm trying to find out how similar / different you are to my wife's condition. She is 62 and diagnosed PPMS about 2 1/2 years ago. Please do not feel obligated to answer the questions if you are uncomfortable with it.

Thanks - Brad
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Re: Stem cells and primary progressive MS

Postby HUD45 » Wed Nov 16, 2011 12:12 pm

Hi again Brad...No sweat with the questions. If I can help I am glad to do so.
You are correct in that I underwent non-myeloblative autologus HSCT in Tel Aviv. It was performed under the supervision of Prof. Shimon Slavin at CTCI. And yes again due to the gentler non-myeloblative nature of the procedure my recovery is speedier and I will not need reimmunization in the future. The protocol is not the same as used by Dr. Burt at Northwestern and is specialized for individual patients, not cookie cutter across the board as in Chicago.

As for my specifics, I am 45, was diagnosed PPMS in 2007 and my self assesed EDSS at treatment about a 5. I continue to be very optomistic of a positive outcome after treatment and I remain very glad I undertook the rigorous mental, physical and financial burdens of the journey to Israel.

Hope this helps...HUD
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Re: Stem cells and primary progressive MS

Postby bspotts1 » Tue Dec 06, 2011 10:28 am

very helpful information....thanks HUD

brad
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