I think the trial is over, but he is still taking new patients on a compassionate basis if anyone is interested.
- Family Elder
- Posts: 801
- Joined: Thu Feb 09, 2006 3:00 pm
- Location: Northern Virginia
If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
2) What was your EDSS before and what is it now
I started at a 5.5 and am now a 1.5.
3) What was their screening process like to get in?
I was in the clinical trial. I had to enhancing lesions within a short time when I was first evaluated. I was accepted into the trial; but received the control group. which meant, no HSCT. But, had to continue on with my drug...Copaxene. And, hope to have another attack, lesion, and have my EDSS increase. It was not an easy decision for me to stay in trial. Especially, since a local hospital would do what they considered, a comparable treatment. They did/do the 4 days of immune system ablation, just no stem cell recovery. They say similar outcomes, for about 30K.
I did get worse; and had new brain lesions 8 months later. I was switched over and received treatment. Luckily, my treatment was covered by my insurance.
What is this ablation treatment you mentioned??? What facility had a similar treatment and what was it???
Sorry for the questions but I've been researching stem cells and have actually been accepted to go to stemgenex. This is getting stem cells from you own fat and reintroducing into your body. This doesn't "reset" your immune system though and all the red flags go up when you look into their company. They are huge salesman, they don't follow their patients for more than a year and they only give you patient testimonies. The testimonies on the fb reviews are mostly positive though and makes me want to give it a go. The chemo route scares me so I was just wondering what your course of treatment involved.
For Dr. Burt's clinical trial at Northwestern in Chicago. Once you were accepted into the trial....you were randomized to either receive HCST; or you stay on an FDA approved treatment. I was randomized to receive standard treatment-Copaxone, in my case. Once I got worse on Copaxone (enhancing lesions and physically declined). I was switched over to receive HSCT. Treatment is stem cell harvesting, chemo, then my own stem cells were infused back into my system.
If you are researching, I would take any "red flags go up" to heart. Through my own research, I personally believe that the immune system reboot is the key, more so than the stem cells.
Good luck with your research!
I think the EDSS can be subjective. I was affected over many areas, so no single issue was debilitating.Pesho wrote:reallyreally, from 5.5 to 1.5 sounds incredible. Can you please tell us what issues you had 5.5 and what got improved and how much?
Before and after HCST
1) Tightness in chest (didn't realize I had)-- Gone
2) Balance problems-had been getting worse-- Still some slight balance (when I close my eyes, and stand one one foot), but mostly gone
3) Brain fog (didn't really realize i had)-- My scores have improved on testing, and almost immediately (while still in hospital) my "scramble
with friends" score improved dramatically-haha
4) Numbness in leg and trunk-- Still there
5) Difficultly swallowing & choking at times-- Gone
6) Bladder urgency-- Improved, but not gone (am I just getting old?)
7) Vision-- Improved.
Fatigue never really affected me. Hope this answers your questions. I feel some of my symptoms come back when I get stressed or really tired, which the Dr explained is normal.
- Similar Topics
- Last post
- 1 Replies
- 1776 Views
Last post by 81Charger
Tue Mar 27, 2018 12:58 pm
- 2 Replies
- 143 Views
Last post by Petr75
Wed Jan 01, 2020 7:36 am
- 2 Replies
- 484 Views
Last post by Zyklon
Tue Jan 01, 2019 9:44 am
Five-Year Longitudinal Study of Neck Vessel Area
Last post by frodo « Mon Jul 30, 2018 3:44 pm
Posted in Chronic Cerebrospinal Venous Insufficiency (CCSVI)by frodo » Mon Jul 30, 2018 3:44 pm » in Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- 0 Replies
- 1166 Views
Last post by frodo
Mon Jul 30, 2018 3:44 pm