The only one real cure for MS

[AMJ]

Craig, I am sorry that you suffered a mini stroke, but I am very pleased to read of your success with your stem cell treatment.

What was your walking like prior to your treatment and what is it like now. My walking did not improve after my treatment but I do feel better overall.

I was discharged from physio with exercises to do at home. I thought they discharged me because they didn't think I would improve any further. After reading that you have continued physio all these years I am thinking that I should return and give physio another go.

Thanks for sharing and I hope you continue to see further results.

[JerryD]

AMJ,
I am curious of your story. Did you have HSCT? If so, when and where ? How are you, now. Did your progression stop ? Do you know about George Goss and Edwin McClure ? I want to hear from anyone who had HSCT. Please respond.

[AMJ]

Jerry, see my previous posts in your post calling anyone that had stem cell therapy. I agree with you that HSCT is the stem cell therapy that has proven it is effective. That was not an option for me due to the cost. I am thankful that my neurologist was part of the clinical study I was in and offered me the chance to be part of it. There was no cost to me.

My EDSS score remains stable after 2 years. I am not on any DMD. I try my best to follow a good diet and I do take supplements. Previous post below




Join Date: Oct 2012
Posts: 14
Yes I think that HSCT has proven that is effective in stopping and in some reversing MS, but as we all know it is not affordable at this time for most of us. Therefore this was not an option for me. I was very happy to be included in this clinical trial. There was no chemo involved.

To review my EDSS score, When I was diagnosed in 2005 my EDSS was 2. In Jan/10 my EDSS was 4.5, by May it was 5.0. in Nov/10 My EDSS was 5.5. I had the stem cells implanted in 2011. My EDSS has remained at 5.5.

The study report said "no patient had an increase of EDSS score of greater than 0.5 and most patients had either stable or decreasing EDSS." I would like to know where everyone started on the scale and where they ended up. It would be interesting to see if those on the higher dose had better results.

I wish that I would have an improvement in my walking, but I no longer get migraine headaches which is a major improvement in my quality of life. I just feel better overall. I still suffer from fatigue but not to the same extent. Yes I believe that I may have seen all the improvements that I am going to see. Will my condition continue to remain stable? I don't know but I do know that the research is continuing.

I am hopeful that it won't take years for stem cell treatment to become available locally and affordable for everyone.

[JerryD]

Thank you AMJ, for your response. I did see your post and reread it, just after I posted this one to you. I appreciate your perspective, you know 'walk in your shoes' etc.
I am fully aware that, as of now, there is a risk of death associated with HSCT. Some say 1 to 2 %. Some say higher. There is also a risk that the treatment is 86% effective. But if I had the chance, I would take the treatment. If you are living a better life today than before you had the treatment, that says a lot. Good luck

[cgarri]

My walking times & PT routine

AMJ,

In the phase I trial, a 25 ft walk was one of the standard tests to measure progress. I kept the data, so here are a few times (in seconds).

pre Xplt -- 17.75 -- one cane
1 yr. out -- 12.30 -- one cane
3 yrs. out -- 11.00 -- one cane, the official end of the trial
10 yrs. out -- 6.50 -- unassisted

As to the physical therapy, I took about a year to recover from the transplant, then started seeing a therapist. My initiative, not a suggestion from the doctors, but I did clear it with them. After about two years, the therapist said she'd taught me everything she could, and I should join a gym. I did, and except for an occasional question to one of the staff trainers, it has been self directed PT ever since.

Craig

[fishead]

a "Phase I" Clinical Trial (Human Research), is limited and typically is followed up with Phase II and III Trials, before ANY papers can be written or credit given to the Clinical Trial.

~LaTish
former Clinical Research Coordinator, RN, BSN &
MS patient

[AMJ]

Craig, that was great to see how your walking improved. I hope you continue to see further improvements.
All the best.

AMJ

[MMMMS]

If this treatment is still in trial phase, no one can call it a cure. It's not even an approved treatment yet. It's a possible treatment and a possible cure.

If the trial results look promising so far, that's great.

It's especially good that it doesn't use fetal cells. I'll be watching for longterm results. Won't it be great if this is a cure or even just a better treatment!

Thanks for posting the info here.

[bubblebabe]

I was digging around the older posts today and stumbled across this post. Quite, um, thought provoking to say the least.

Anyway, I tried the OPs link to his blog thinking I wonder what his status is now but it didn't work for me. Makes me wonder why his blog is gone and how he his doing at this point

I just have to say that the OPs use of the word cure is so inappropriate and his suggestion that the definition of the word cure is subjective really irks me. It's not subjective and open to interpretation, its quite the opposite. Cure would remove the disease and restore your health. Any variable of that and his descriptions are more suitable for treatment not cure.

I know I'm beating a dead horse since this post is so old but I just had to say it, lol.

[JerryD]

I corresponded with George Goss about this subject last year, several times. I haven't tried to contact him for a long time. His definition of a 'cure' for MS is that the 'cure' arrests the progression of the disease and stops the 'progression' indefinitely. He doesn't make any claims regarding erasing the deficits that have been acquired.

[Katje]

George Goss is not that far out from treatment to make such claims. He really thinks this is a cure when Dr. Burt himself will not even make such a statement.

George Goss angers many people with his claims and kicks them out of his group if they challenge the fact it may not be a cure. I talked to Northwestern and Dr. Burt and many things George Goss says Dr. Burt does not agree with. Honestly I would stay away from that guy.

[JerryD]

I am happy to hear from you, again, Katje. It seems that we all hear something different about the SCT outcomes. Wouldn't it be nice and helpful to hear from actual SCT patients about their post SCT experiences. As it is, I know that Dr. Burt has been performing this procedure since the late 1990's. I bet there are thousands of post SCT petients out there. It would be great for this board to hear from some existing post SCT recipients and help us to eliminate some conjecture.

[Katje]

1990 and it was really a "cure" or that great, don't you think we would have heard more about it by now vs just a couple people?

I think George Goss does disservice to all STC's out there. He is so fanatical and his information is so slanted.

[Katje]

Regarding George Goss, my personal feelings aside. I do believe he has probably helped many people. He means well and he believes strongly in this. He is not a bad guy.

I just wanted to get that out.

[JerryD]

This discussion doesn't have to include our personal feelings about George or any other former patient's experiences. I would like to hear from the other former patients about their experiences. If these procedures were failures, why does Dr. Burt continue to do clinical trials?

I spoke to someone at Northwestern and got the info that Dr. Burt had performed SCT on 'progressive' MS patients. But that procedure showed little efficacy, so 'progressive' patients have been 'excluded' from his trials since the early 2000's.

That leads me to question where the patients are from the past 15 years of trials. I have read about 1 young man that received SCT at Northwestern, a few years ago. It would be great to hear some word, first hand, from other SCT patients. I know they are out there ! Good luck and great to hear from you


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **