really are not that different from those with MS...the PLACE where the demeyelination occurs is simply different.
MS the deterioration occurs in the Brain...with potenatially broader and long term permanent damage consequences..
In a way, we are 'lucky' that our deterioration occurs at the extremities. I suggest that you read up about MS folks on this board and others...Their fears are akin to ours. Their research helps US. It Does NOT make it hurt less?
Surgeries and other major 'invasions' for testing are similar in the rationales for doing them and their potential pitfalls.
Ultimately, we really are part of a very LARGE neurological world. Then part of an even LARGER medical world with all the other things we have as a result of or because of what we 'have'.
We definitely are a GOOD part [tho esoteric] of a somewhat far larger part of a bunch of really good folks who HURT!
We are not alone, ever... - j