Anybody had stem cell on here
Know someone who has and its worked wonders
Isn’t this something that’s only in the early stages of trials at the moment?
It certainly looks to be the way forward, but I imagine not for a number of years for the majority of us.
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In what way has it done wonders?
The reason I’m asking im in the process of having mri scans to see if I qualify for the trail !!
Do u know which stem cell trial she went on?
this refers to the ‘miracle cure’ (tabloid trademark); where they take your stem cells, clean the up, destroy your immune system and then give you back you cleaned up stem cells?
a control-alt-delete for humans…
Haha, Paolo, I love how you describe things!
I imagine there are a few different stem cell trials going on, but HSCT looks to be the most promising and there is currently a trial in Sheffield. Stem Cell Therapy for Patients With Multiple Sclerosis Failing Alternate Approved Therapy- A Randomized Study - Full Text View - ClinicalTrials.gov
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I started on the STREAMS trial but my stemcells didn’t grow. If it’s that one then good luck, it was the trial I really wanted to try.
Sonia x
The Sheffield trial? That is the one that Dr Burt is involved in, right?
I am just a touch curious as to why we have heard nothing much about Dr Burt’s trial in Chicago that started about three years ago.
I do know that Dr Burt would only take patients into the trial at Chicago Northwestern who were very active RRMS and would not touch either of the progressive forms of MS. The drugs he uses to knock out the immune system can be highly carcinogenic (one person on the Chicago trial got breast cancer), so it is really a matter of just how bad do you want to be rid of MS.
I would advise anyone considering HSTC (and, yes, I do believe that this treatment shows more promise than anything else) to do some research on Stella Thorley. Her story can be found on the MS-UK website, and details how an early UK trial went wrong (she ended up losing fingers and toes)and is a good example of how an experimental treatment can miss a small (but vital) point while concentrating on the major issues. Her story was posted on here regularly (as well as on MS-UK) and just suddenly stopped. I have never been able to find out what happened to her.
Geoff
There are many different trials, and different forms of stem cells trials, going on in the UK and across the world.
Imperial College London were conducting a trial into stem cells which did not involve ‘nuking’ the immune system.
It’s important to fully research the risks, costs, prior records and alternatives before participating in trials.
The only information I could find on Stella was this facebook entry a couple of years ago and she appears to be still working, with slightly improved mobility. Pity that her bravery was not better rewarded.
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I too have never been able to find out what happened to Stella. I have never found any tributes indicating she had died - which seems odd for someone whose story was followed by so many - there would surely have been some mention? Which gives me hope she’s still around somewhere. But equally it’s not very encouraging that nothing has been heard in a couple of years. Somebody must know?
Regardless of how things eventually turned out (and I do hope as well as may be) Stella undoubtedly paid a very high price for embarking on this experimental new treatment (and I gather hers was a proper, regulated, UK trial, NOT some company offering to do it for money!)
I’m not anti - I think it shows great promise as a research area, and eventually they’ll find ways to make it safer. But as things stand, I think you’d have to be at the very aggressive end of the MS spectrum to make the risks even worth contemplating.
Tina
Stella is doing ok she says (via Facebook) - apparently UK DRs have changed their protocol since her experience and people are often directed to her story before they undertake HSCT. There are quite a few closed facebook groups you can join for helpful files and questions / answer sessions with patients.
Stella is alive and making improvements in her life - I read from her earlier this year - she seems pretty grounded in her decisions and making the most of things. Certainly doesn’t seem like Nottingham had her sepsis under control at all… real disaster. The Sheffield and London hospitals are very experienced doing it now.