The protocol for the sct program is that you must have tried steroids and 2 other treatment options (IVIG, PE, immunosuppressant, chemo) and failed. By failed, it means that despite the various treatments, the patient continues to get worse or shows no improvement. It does not have to be life threatening …
For me, my quality of life was threatened. Despite the treatments I received, I continued to get worse – needing IVIG more frequently and not responding well to steroids or immunosuppressants. The sct did not feel extreme to me as I was suffering all the time and it brought me relief.
I am now 4 months post sct. I receive no treatments and have reduced my cocktail of pain management prescriptions from 15 pills and 6 different Rx (with Norco added whenever needed) to 6 pills from 3 different Rxs and no Norco (and am continuing to reduce). Before sct, I couldn’t walk more than a very short distance before I was in screaming pain in my feet. I was using canes, crutches and ultimately a wheel chair to remain mobile. I did not have a great deal of muscle involvement, but the pain in my feet when I walked was unbearable and was the reason I used aids to walk. I now have no pain in my feet and can walk easily. Before sct, I would have bouts of horrific cramping. I now have an occasional twinge and that is getting less. I have not noticed much change in the amount of numbness in my feet, but the numbness is no longer all the way up my legs.
Before sct, my life was very medically intense consisting of weekly treatments, monthly (at a minimum) doctor appts and lots of meds. Now my life is coming back to me … my 1st appt with my neurologist post sct is in Feb – more than 7 months from my last appt. And I am starting back dancing after the 1st of the new year!
For me – this was the only option where I saw myself free of this horrible disease.
I hope you find the path that brings you to health.