Hi Scooter,
I would wonder about your diet and what meds you are on. I am like you in that some of my problems come and go and I get frustrated because by the time I see the doctor I am "ok" again.

One thing I started doing is taking a Vis-A-Vis "magic marker" and drawing lines on my body, showing where the pain was. If it originated in one spot and traveled down my leg, I would draw a circle on the place with the pain, then a line with an arrow on the end for where the pain went. Then I take a digital photo and show it to the Neurologist. My last Neurologist was not interested. I found a better one (I think), so I saved the photos. Be VERY careful you use a magic marker that will wash off. I still have a blue line down one leg to prove I wasn't paying attention. My wife found some permanent magic marker things and put them in the same drawer. Oh well.

We have some extremely bright people on this forum (wish I were one) who understand many of these problems and if you had worded your thread a little differently, might be of help.

Please don't be offended, but "Having a bit of a hard time" is probably an understatement, or at least it is to me. It sounds like you are being -- uh -- modest maybe. I would be very concerned about this and trying to list my area of concern in the title of the thread.

Having said that, I started the thread about "I have so much wrong with me, how can this happen" or something like that. My memory is too bad to remember the exact name.

Did you doctor even hazard a guess, other than it might be MS?
A lady on here PM'd me and pointed the way to several areas I might fall under. CCHS was the one that fit. That was her first choice also. She was right. One of the clues was that I was born with this problem. If I had not told her about my breathing problems as a baby, she probably would not have linked the two things together.

Please don't get discouraged. I have put posts on different sites and did not get one answer. That was discouraging. I did not know if I had offended some protocol or what. So I posted a second time to my thread and worded my questions differently. I got a bunch of answers then. If you are new to internet forums and like me, I try to never, ever break the rules or offend people.

If I am asking about a CPAP machine, I list the exact machine name, etc. If it is a disease, I try to list my symptoms like you did. MRSD is a real blessing on this forum, as are others, but she has educated me in several things, especially which vitamins and minerals can cause which problems. WOW ... taking too many vitamins or minerals can CAUSE problems?? I didn't think of that.
It sounds dumb as I look back at it, but she really helped me see what area I lacked education in.

OK, this post is resembling a novel now, I will end it. Best wishes in getting an answer. DON'T GIVE UP. If it weren't such a long story I would tell you of the obstacles I faced in my Respiratory problems. I finally made a trip to the right hospital in Denver, CO
(I live in Calif.) and they found the problem. A "hole" in my heart was causing my Pulse Ox to be low. I passed test after test saying I was normal, but I knew I wasn't. I had faith in myself and so did my doctor. Hang in there.