Thanks JB . I thought ALS clear spinal tap till I read several neurological studies that say protein often slighly high like mine. Of course does this knowledge help me probably not . I would be better to stop searching and get a life. Its just I worry that i might have something fixable if I find a name for it soon
Thanks again for your time
Here is the neurologist who wanted me to seed Dr Spiera— Mark Sivak (292) 241-6719
Both he, and two of my New Jersey doctors recommended him, (Spiera). Anyway, I did not love this neurologist personality wise, but he is still someone who could be an excellent extra opinion. He is neuromuscular, not specific to ALS, and probably leans more toward MS and MG, CIDP etc.
Here is my neurologist at Johns Hopkins. Her father, also a neuro, is the 'Sumner' of Lewis-Sumner CIDP variant, which is also known as MADSAM. Her name is Charlotte Sumner, (410) 614-0093, and I DO love her Her secretary's phone number, which is the one to use probably, is (410) 614-1196
IMO you're not all that far of a drive from Hopkins. I used to do it from Bergen county NJ. Just a thought.
Try copy and pasting into your browser bar. This is the Mt Sinai site, it does not have his private practice phone number listed (I saw him at his office, not at hospital offices) He's pretty ancient, I was glad to see he's still on staff, he may not be seeing that many patients any more. His son is Robert, and is very well respected too.