Hey, I am wondering what your opinion about stem cell therapy (HCST) for PPMS is. Would you try it? Why/why not? Would you rather try it as a young and relatively new disgnosed patient? This is from significance from me as I am under 30 and diagnosed with PPMS. Or would you rather wait and hope for better treatments in the (near?) Future. Would be happy to hear a few opinions about this topic as I am only very shortly part of the MS-group. Greetings!
Despite the press reports, the big stories generally relate to RRMS, there is trial stuff going on in the UK but there’s quite strict criteria and I just failed to qualify for it, as I currently have no active lesions Typical in that there was live lesions when I started the STREAMS trial in 2015 (it was a stemcell trial without chemo) but my cells didn’t grow in the lab so I had to come off it. Here’s some detail about UK trials: https://stemcelltransplantuk.wordpress.com/
I’m now 47 and my EDSS is 6.5 but I’m now having to consider a wheelchair full time, so I don’t plan on going abroad for it. The stress, waiting list and fund-raising required, at my stage of progression just says it’s not worth it but we’re all going to have our own thoughts on that. I think I did a good job of ignoring problems and had MS for a long time before I was diagnosed, from talking to various doctor’s I’ve suspected I’m probably PRMS but thruth be known, I could be SPMS - who knows, my point in that even with a PPMS label, we’re all still snowflakes so don’t start to imagine the worst. I’ve blogged and tried to be a warrior… but I’m a bit frazzled right now, I’ve not quite given up tho If I’d had a crystal ball when I was diagnosed, I’d have fought like mad for it. I think the thing with HSCT and PPMS is that the likelihood of improvement is not so strong but the hopes of the trial is to slow/stop progression. My thoughts only tho.
ps. that’s me in my profile pic before diagnosis and I’m coming up five years since. I’ve put my family thru quite enough strain having been on two trials to date. Seriously, they’d like to wrap me in cotton wool as the bruise count has gotten a little too high recently.
Good luck whatever you decide.
ps. blog’s here if you have time for a read: Trial time! - my MuSh
After seeing 3 neurologists over a 7 year period the last one suggested I had M&S and possibly progressive. So I went to Mexico in Sept 2016. All my sensory symptoms have gone and still got spasticity and foot drop but am do much better as can swim and gym most days of the week without needing a nap during the day. I am in contact with several ppms people who had the treatment with me and they all feel that the treatment has stopped the disease. Best yo get treatment before too much damage has set in. You can get hsct for ppms on the bus if you have active lesions
Thats interesting. For how long did all of you had PPMS before and how long is the treatment ago now?
I had my treatment in Sept 2016. I started having walking issues in 2010. I was an eds of 4 and I reckon I am a 3.5 now. Most people with progressive disease don’t show much improvement in walking as motor damage seems to be permanent. Big walking improvements are seen in RRMS patients as often walking issues are just due to inflammation as opposed to nerve damage. People with ppms usually improve their fatigue and brain fog as these issues are linked to effects of the disease as opposed to permanent nerve damage. The disease essentially stops.
Great, thank you for the information. I wish the would do more studies about the effect of this treatment in PPMSer and their general improvements (walking, cognition,…)