My HSCT Six Month Follow up

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My HSCT Six Month Follow up

Postby reallyreally » Thu May 22, 2014 8:57 am

I am not posting this to start a debate on whether or not people believe this is "the right" thing to do. I am simply stating my results. I researched, discussed and agonized over this decision for a year. I did not jump in blindly, it was a very thought out, personal decision. Trust me. I know the might, should, would, and all; so please don't try and "inform" (or bash) me.

Last October, I had HSCT stem cell treatment at Northwestern as part of the MIST clinical trial under Dr. Burt. I took copaxene, ate a very healthy diet, took tons of supplements and exercised (walk 2 miles, out in the sun) everyday. And still had new lesions, on my spine and brain. I spent 16 days in the hospital; about 5 weeks off and on in Chicago total. My insurance covered the procedure.

My 6 month follow results: The newest lesion on my spine (enhancing 6 months ago) is no longer detectable, and I have no new lesions. I have gone from a 4 EDSS to a 1 EDSS. Some problems that I didn't know I had have improved, like my vision and bladder. My balance is better, my cognitive ability is better, my hand/eye coordination has improved. And, that awful dark, brain fog has lifted. I still have the numbness, that may or may not get better. I am not on MS medication, but continue with everything I was doing before (walking, supplements). I am hopeful that each year I will improve and that I have put my MS in remission. I will go back in 6 months, then again once a year for the next few years. They have told me that Burt should be publishing his paper/results soon. Hopefully, opening the door to others that might want to try this option.
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Re: My HSCT Six Month Follow up

Postby DougL » Thu May 22, 2014 11:00 am

great to hear. i wish you continued success and healing
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Re: My HSCT Six Month Follow up

Postby RCC » Fri May 23, 2014 10:43 am

Good for you that is awesome news. I've been in contact with Dr. Burt's team as well and I am looking to be included into the trial. In my opinion it is very smart for the insurance companies to be funding this research...$150K for a one-time operation is much less than $50K/year for 10-30 years.
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Re: My HSCT Six Month Follow up

Postby MSandI » Fri May 23, 2014 11:30 am

That is great news for you!! Congratulations, I wish you continued wellness.
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