Thanks en bloc! That's really useful info. Im going to see my neuro in a few weeks so will update him on how the steroids went and I think he may suggest the taper pack. I havebt ever tried the steroids before.
Did the cellcept help your neuropathy? I understand yours is affecting the ganglion as I believe mine is, being full body wide. Obviously not good news that you had to stop it.
Both times I had ivig I came away and it flared up badly in my forearms straight after. That's why we left it. I also cannot get anymore funded through insurance. Based on the people he sees who have nld sfn, my neurologist didnt think my reported response at that stage meant it was worth pursuing for the time being.
The 'disease' is without any question whatsoever affecting my motor nerves as im now sitting on skin, bone and a tiny bit of fat where my backside used to be, plus more obvious atrophy elsewhere.Once this has been proven then I don't know what the proposed response would be in terms of treatment options - if anything different.