Re: 18 months of hell, need answers!
I really feel for you, sounds like a very tough thing to deal with. Truthfully, ths does not sound like MS; however it DOES sound neurological. Has your husband been spoken to about Parkinsons Disease? My stepfather has it, and his symptoms are very closely related to your husbands....also, MS does not generally come on this fast...the disease is progressive, so it is possible- and its also very possible that you didnt notice the early signs, nor did he--but other diseases such as Lyme, Parkinsons and some forms of brain infections can come on much faster and harder.
Lyme can truly only be tested by one lab to get a definitive answer; so many tests come back negative which are later found out to be positive...spinal fluid is also a way to test for Lymes, as well as infections...has a spinal tap been done? or mentioned?
You said MRI negative, how long ago was it performed? MRIS can change from day to day..if its been more than a year, he needs another one. And, what was scanned? Was it both the brain and Spine?? You said Neuro tested for MS...there are really only a few tests for MS; and alot of it is clinical evaluation..if he didnt have a spinal tap and he didnt have both a brain and Spine MRI, he wasnt tested for MS...from there, evoked potential tests might be done as well as other tests on the eyes and nerves.
You can rule out ct scans as well as ultrasounds as testing tools for neurological diseases- although they might have been the necessary tests at the ER- the dont tell much about Neurological disease usually.
Last question; what KIND of specialists have you been seeing? And, is it possible to see a MS specialist in your area, and possibly even one who specializes in Parkinsons? A diagnosis is not going to be easy, but both of these diseases usually require RULING out everything else, which would be a helpful place to start!
I wish you luck, this sounds horribly dreadful to be going thru. Even with my own MS, and the fact that I am watching my stepfather become more disabled by the month- knowing what we are dealing with makes it that much easier..
Please keep us posted and try to be brave. Your husband needs you more than ever.