Before being diagnosed with nmo

I'm 63, and for the past 3 years, I've been having problems with my legs. They were so weak and hurt really badly that I could not even step up onto a curb or climb a couple steps; I had to crawl. I had been to the doctors several times, and no help, no answers. I also would sweat really, really badly, where my hair looked like I just got out of the shower. This happens even when it is cold out. When this would happen, I sometimes would get very sick and feel like I was going to pass out. Again to the doctor and no answers. Finally, I told my doctor I wanted to be tested for MS. So they sent me to a neurologist, and he tested me, and it came back as NMOSD.

Current symptoms and treatment

I get blurry vision at times. Now, I've had a headache for 4 months straight with no relief after all the meds I've had for headaches. So after being diagnosed, they did the steroid infusions for 3 days straight. Then started the infusions for NMOSD. I have to say, after the first treatment for NMOSD my legs got a lot stronger all of a sudden, but that's all. Now my neck hurts so bad it's hard to move it, and I do have lesions on the brain stem and on the brain itself.

The search for an expert

I went to a specialist for my eyes, and he said I had no nerve damage yet from it. I was happy to hear that but I still get blurry vision at times and double vision. So, back to my neurologist I go visit him and ask him if all of what I'm going through is caused from this NMOSD. He really has no answers for me I believe he has not maybe dealt with this before. So I made another appointment with a different neurologist out of town, one who has dealt with it, and I go this coming Monday so I hope I get some answers. My problem is I have questions about all this, like "are these part of it that I'm going through?" and "what do I need to be watching for?" and "what's the prognosis?" I have a lot of other health problems so I need to know but I feel like I may not get the answers I need.

Navigating a rare disease and the ER

So I like this website I found here it really helps a lot to be able to see what other people go through to make sure I'm not crazy lol. If I feel I'm having a flare-up I go to the emergency room. But I don't feel emergency room doctors know about this either because I always have to tell them I think it's a flare-up and they treat me like I'm crazy and have no idea what I'm talking about. Do others have this same problem where doctors don't really know? I mean I know it's rare to get, but it kinda has me scared because of the unknown. Sorry this was so long.