HSCT
Hi guys,
I've just been diagnosed with RRMS last week after previously having a clinically isolated syndrome about a year prior. I feel I've got off pretty lightly so far (numb left foot and pins and needles in my fingers) but I've been reading up on treatments etc.
The MS nurse is currently recommending I start on Tecfidera which in going to do, but I was reading up about the stem cell treatment option but they couldn't give me advice on if it was good for me to do or not.
So I was wondering if any of you guys have done it already and what your thoughts were on it?
Thanks in advance for any advice :)
Hey Andrew. I'm on Tecfidera and can say the symptoms for me aren't too bad.mostly flushing, heat flashes and I gotta watch my diet, but that might be completely MS related I believe the stem cell treatment might be good, but I'm not sure if doctors don't have enough research, or (conspiracy theory) they don't want people to do it because there's nothing in it for them (with the excuse of it being "unproven"). I personally feel they might have something with it, and hopefully we have enough time to wait and see progress.
Hi Andrew - HSCT is a radical therapy, not to be undertaken lightly but it is effective (though it remains to be seen if it is more effective than the high efficacy drugs - lemtrada, ocrevus or tysabri). There are hsct groups on Facebook but be aware they are all quite fanatical and downplay dangers and side effects quite dramatically. Depending on which hospital you’re in you could ask to be referred to the STAR-MS trial which will assign you to either the hsct arm or the high efficacy drug arm. HSCT is probably safest when done in the context of a clinical trial, but there are lots of people that pay 50-80,000 to have it done privately in England, Mexico or Russia.