Medical stuff update
Medical stuff update
You might know that I’ve been a little over-excited (understatement!) about being a participant in a clinical trial. Moreover, it was the only thing I truly believed could help me - just help, not “fix” me. I’m a realist, just putting the brakes on would be wonderful J
The idea of HSCT* was always a bit risky and I knew I couldn’t afford it, it cost was about £30K in Russia, and yes, I casually looked into it. Then the girl appeared on TV recently talking about her miracle cure - well now we’d be looking at a 3 year waiting list for Russia.
The STREAMS trial is about using your mesenchymal stemcells - they take them out, grow them and put them back - I think you can imagine why I felt fortune was smiling on me…… but even after everything**, my stemcalls just didn’t grow L
However, the medical world has gone a bit mad on MS recently. Finally, there is a possible treatment for PPMS and there’s also work going on trialling existing meds for MS use. And, I still have DMDs to look forward to so it’s not all bad. Two of my options involved hospital trips and as if by magic the other option is a twice daily tablet (absolutely no needles involved!) not as effective at stopping relapse frequency but good first choice.
OK, I think I’ve filled you in of the main bits of the story. I sort of knew the trial wasn’t working at about the 3 weeks mark, when I’d heard nothing. I even made a joke in the email I sent to the doctor at about 5 weeks - because if anything like my hair growth, there should have been enough for at least one and a half people by then.
Onward’s and upwards!
*For non MS’ers, HSCT is Hematopoietic stem cell transplantation, they reset/restart your immune system using high doses of Chemo – consequently being exposed to pretty much anything germ could kill you and it just doesn’t work for everyone.
**Everything: there was a twenty-odd page document to read and sign. I had 3 appointments, the first meeting just to discuss and carry out a basic physical. The second was 3 hour consultation and physical and the third was a day long – physical, lumbar puncture and harvest. I also agreed to at least monthly appointments over the coming year, including another 2 lumbar punctures (yes, they gave me drugs but not before I agreed to have the lumbar punctures, it was all 100% above board).