I was just looking into Stem Cell Treatment WOW ??? It is very expensive but can it work, has anybody had this Stem Cell Treatment for Multiple Sclerosis.
Not personally, but this facebook group is probably a good place to start.
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Whammel may be correct - I have no experience with stem cell treatment - but personally I don’t touch Facebook with a barge pole, especially when it comes to medical advice.
I would go to the Barts blog for expert opinion on this topic, particularly as it relates to progressive MS:
http://multiple-sclerosis-research.blogspot.com/2016/02/clinicspeak-reflections-on-hsct-after.html
And also the MS Trust, who are always fantastic when it comes to answering questions if you write to them:
When I went to the FES clinic last November I met a lady who had stem cell treatment for her PPMS. Foot drop in one foot greatly improved to not needing the FES. The drop improved slightly in the other foot. But she is certain that it has stopped the progression. She no longer has the fatigue which she believed was due to the ongoing disease activity.
She recommended going to Russia. I am on their 2 year waiting list. But I hope to be seen sooner in Mexico.
I have discussed it with my neuro who is against due to risks but he did say he knew a lot of people had benefits. I said
well the probability of my mobility etc getting worse with this disease is 100% but the chance of death is 2% and the probability of halting progression is 75%. That is a no brainer as far as I am concerned !
I have just been diagnosed (after years of appointments and MRIs) with RRMS but to be honest it is more like PPMS/SPMS
Moyna
“…well the probability of my mobility etc getting worse with this disease is 100%”
Personally, I’d rather be in a wheelchair and be there for my loved ones than dead.
From the above Barts link: "“The seemingly miracle treatment effects of somebody in a wheelchair getting up and walking is not unique to HSCT. We see it with other highly-effective DMTs. Provided you have sufficient reserve capacity in the brain and spinal cord you will see spontaneous recovery from relapse-related disability once inflammation is switched off and recovery mechanisms are allowed to proceed. Tragically these Lazarus-like examples create unrealistic expectations for pwMS with more advanced disease. Once you have fixed or progressive disability it is likely that you have lost your neurological reserve and hence even if you switch off inflammation with HSCT, or any other anti-inflammatory DMT for that matter, it is unlikely that there will be significant recovery. This is one reason why so many progressive MS trials have failed in the past. Therefore the benefit:risk ratio changes with more advanced disease and its the reason why most HSC trials will have age and disability cut-offs.”
Another excellent post by Barts:
http://multiple-sclerosis-research.blogspot.com/2016/02/thinkspeak-do-we-really-need-wrecking.html
Each to his/her own though.
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I have been looking at a stem cell treatment in California that uses fat tissue (adipose stem cells), which apparently carries more stem cells than bone marrow. It sounds absolutely brilliant. I have been accepted for treatment but now need to know if it is worth it and if it is going to be a positive move and that it won’t make things worse. If permitted I have a slideshow link from them detailing the procedure I could attach. I have read mixed reviews on facebook, some say it was great/good experience and others saying it was a waste of time and money.
I am not expecting it to be a miracle and I personally think it will take at least a couple of treatments. If I just got some movement back in my arms and hands. I suppose it comes down to just needing a professional to say yes or no. Can anyone please help?