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This topic contains 4 replies, has 4 voices, and was last updated by Avatar Peasantfarmer 5 months, 1 week ago. This post has been viewed 1848 times

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  • #8465
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    AlanB
    Participant

    Hi, I have been recently diagnosed with MSA-C and have been reading all I can online. I note that there are organisations offering stem cell therapy. Has anyone had any positive or negative experience of such treatment?

    #8577
    Avatar
    Hellebelle
    Participant

    Hi Alan, my dad has MSA and I have been readingredients up on this also. I have a friend who has MS who is just about to go through with the assessment for this through a private company, but I haven’t heard of anybody with MSA doing this. I really hope you are able to get some more information so that you can decide whether to go forward with this.

    #8726
    Avatar
    Hereticus
    Participant

    Hi,

    There has been a lot of success with MS and other ailments with stem cells, although this much more limited with Parkinsonisms (ie MSA) and a lot more research is sadly needed. I will try and summarise it here. Stem cell therapy and techniques is a massive umbrella term, with a wide array od approaches being trialled around the world. Perhaps due to cultural, or legal/ethical issues different counties are perusing different approaches.

    Some, but not all, stem cell therapies fall under a category of regenerative medicine. Unlike every other drug, enzyme, antibody approach which can only slow/stop the disease (if we had one that is!), regenerative medicine offers the hope (and I stress this is all it is at the moment) of reversing progression and bringing us back from the brink.

    So, to begin, whats the UK doing? Most of parkinsons stem cell work has been put under Professor Roger Barkers trial taking place now.

    Watch this for more: https://www.youtube.com/watch?v=2LglzkCAUtI&t=14s

    It will run for about 3 years, only includes Parkinsons (not MSA) cases and even if highly successful, will probably lead on to another larger trial. Depressing. I personally would be keen to have this experimentally, accepting the risks “just to see what happens” but due to bad press in the media on stem cells, some poorly run/briefed past work, the UK effort appears ultra conservative.

    That’s the bad news out of the way, now something more positive. Over in the US they have just completed Phase 2 trials on humans with MSA using mesenchymal stem cells. These are derived from the patient themselves (often bone marrow sample) so have less ethical issues and tissue rejection. It is not regenerative medicine – it wont heal you. But it did slow disease progression by a factor of 3 iirc. I have inquired about this in the UK and so far got a blank as my NHS trust has never done it before. I personally would be willing to let them have a go on me but…

    check this out (there a vid in here too): http://www.mdedge.com/clinicalneurologynews/article/136483/movement-disorders/video-pilot-stem-cell-trial-multiple-system

    Some other notable mentions are china. Be ultra careful looking at china, there are hundreds of bogus facilities offering stem cell stuff for your condition. They come with thousands of fake patient recommendations and even publish pseudo academic papers touting their work in “less scrupulous” journals. That said, the government seems to be tightening the regulation as they have a lot of cutting edge science and have fewer ethical constraints than researchers in other countries. One to watch is the use of embryonic stem cells for parkinsons, a couple of commentaries
    http://www.bionews.org.uk/page_846740.asp

    China Is About to Begin the World’s First Clinical Trial With Embryonic Stem Cells


    Unless mistaken, you basically “pay” to enrol, fly over, get treated, fly back and let them know your progress. This has a lot of unknowns, there is much speculation of risks but also much potential. As the cells used are an early stage of differentiation they might, might fix more of the problems in MSA. Time will tell.

    Japan is leading the way using Induced Pluripotent Stem Cells, which they are trialling on a range of conditions but not MSA yet I believe. They have an aging population, a cultural disposition for the superiority of elders and above all, put a lot of money into research. A breakthrough for humanity could very well come from here.

    A host of other approaches exist, such as Induced Parthogenetic stem cells (see https://www.newscientist.com/article/dn3654-virgin-birth-method-promises-ethical-stem-cells/ ) etc

    The bottom line is that, in my opinion, the two things you need to make progress are money and trials. Despite the huge potential both are in short supply. A drug company will pump millions into a drug which slows disease progression, because it can patent it and get an income throughout the patients lifetime. Stem cells cannot be patented and generate no profit. Perhaps that is why, in the UK, advances in these techniques come from Hospitals more than drug companies eg http://www.sth.nhs.uk/news/news?action=view&newsID=715 and http://www.uhs.nhs.uk/AboutTheTrust/Newsandpublications/Latestnews/2015/Surgeonsperformcountrysfirststemcellbraininjectioninstrokepatient.aspx

    Hope this helps.

    #8945
    Avatar
    Hereticus
    Participant

    Getting there…
    http://www.bbc.co.uk/news/health-41099870

    Trials starting next year on PD, then my guess would be MSA a few years later. NHS procedure in 2048.

    #14564
    Avatar
    Peasantfarmer
    Participant

    Dundee researcher Tilo Kunath said on a webcast the other day that it would not work for MSA. I will have to watch the recording to find out the reason he gave.

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