hsct from a different perspective

Isarflimmern · Post by **Isarflimmern** » Wed Aug 10, 2011 12:39 am

shucks wrote:Isar,
Have you had th types of progress that george and others have had from your treatment? Have you had any reversal of symptoms and gotten off of ms drugs?

Yes, I have had some reversal of symptoms and I am completely off any MS drugs. It has been 8 months since my transplant and I am feeling pretty good most of the time. My main symptoms were pain, sensory problems, fatigue, vertigo, muscle weakness, and I was not able to walk more then maybe 15 minutes, after that my left leg would start dragging. Now I am able to go on hour long walks and my left leg is keeping up. Fatigue and Vertigo are almost gone, I have more energy and my pain has decreased by about 50%. I still have sensory problems (some numbness, pins and needles), and I still have days where I'm feeling "off", but it has gotten much better. Most important, I have not had an exacerbation since the transplant. Before the treatment I had 3 attacks in 18 months while being on Copaxone. Within a year, my EDSS went from 1.0 to 3.5, and I was only diagnosed two years ago. I feel that the transplant stopped my MS progression and I hope I will have some more improvements, but I am already very happy where I am. I wish that everyone who wants to get this transplant will get the chance to do it. I believe in this treatment 100%

I hope you feel better soon.

Best wishes,
Sandra

Asher · Post by **Asher** » Wed Aug 10, 2011 4:00 am

Sounds like you made good progress Sandra. And remember your 'only' 8 months post transplantation. Neural damage takes time to reverse, be it fully or partially. I understood from George that it took at least 12 to 18 months for some of his motor function to restore.

shaight · Post by **shaight** » Fri Aug 12, 2011 7:15 am

Isarflimmern it is great to hear another possitive story regarding stem cell therapy. i am really happy for you and i'm sure you will improve more and more as time goes on.

Vikingquest · Post by **Vikingquest** » Sat Aug 13, 2011 3:50 am

Shucks, I think you know the answer to your question. You must get this treatment any way you can, even if it means borrowing the money, you will not regret it. IMHO dont listen to the people arguing for stem cells without hsct, or those still extolling the virtues of ccsvi, those treatments are BS.

Raise 75,000 and go to Germany, seriously, if there is a nation of people who will do a job to perfection, it's the Germans.

This will stop your disease, straight up. 100% in RRMS.

I hope you find a way to get it done and quickly, and keep us up to date.

I'll prob get some backlash for saying all of this, but it's the truth. Be well and grow old with your wife or girl. Get it done.

V

Isarflimmern · Post by **Isarflimmern** » Tue Aug 16, 2011 12:27 am

Asher wrote:Sounds like you made good progress Sandra. And remember your 'only' 8 months post transplantation. Neural damage takes time to reverse, be it fully or partially. I understood from George that it took at least 12 to 18 months for some of his motor function to restore.

shaight wrote:Isarflimmern it is great to hear another possitive story regarding stem cell therapy. i am really happy for you and i'm sure you will improve more and more as time goes on.

Thank you so much Asher and shaight for your kind words. You are right, more improvements are very likely over the next year or two.

Asher, you said it so perfectly in another post. The hope for a better tomorrow is back. When I wake up in the morning, I am excited to start a new day. Before the transplant, I had nights where I did not want to fall asleep because I was afraid what the next morning would bring. 8 months ago I did not think that I would ever be this happy again. I dare to dream of a future (stolen from Asher)

Asher · Post by **Asher** » Tue Aug 16, 2011 2:23 am

I dare to dream of a future (stolen from Asher)

This is not stolen, I guess it echos a universal emotion. I wish this was widely available to more people.

shucks · Post by **shucks** » Tue Aug 16, 2011 5:15 am

It's funny to me that everyone meet or come into contact with who has had this treatment (except 1) are real type A folks like myself who made a decision to do something abbout their illness. I always appreciate you guys' perspective on MS stuff. I am dong 6 months of copaxone now, and the folks in Dr. burt's study told me to reapply at the 4 month mark, so by the time the 6 months were up I could have a shot at insurance approval. I have had one relapse, and when I got steroids for the first time a week and a half ago, the wired me up to where I havent slept regularly since. I did feel like I was back in college, as they made me crave beer and potato chips. These cravings I freely gave into, as I have been on a no beer or carb diet for the last 8 months.

Thanks Guys