I am in somewhat the same boat. I was diagnosed with MS over 25 years ago. I have had exacerbations which were treated traditionally as MS. I took MS medication for years. Then, after all this time the doctor decided I do not have MS because I am not getting worse. He cannot say what I have nor can he explain why I feel the way I do and why I react so well to the medication. So, I am in limbo again. I still say I have MS but I am not taking medication. I can't take steroids any more so it doesn't matter if I have a bad spell or not. There is nothing that can be done for it.

I am angry and frustrated. I don't go to doctors anymore and I don't talk about it with my PCP. I feel so alone dealing with this issue and my inability to do normal things. I wish the doctors could experience how I feel. I don't think they would be so quick to dismiss my symptoms then.