Hi Winic1,

Like you, I have had negative blood tests so far, but my doctors agree that something is wrong with me. Has your neurologist said anything about trying Mestinon first? If he thinks you may have myasthenia gravis, it is usually the first thing they try, I think, and it is safer than Imuran. It also starts working more quickly. Mestinon starts working in about 30 minutes. It also wears off quickly, so you have to keep taking it if it helps you. I believe Imuran takes at least a couple of months (maybe longer) to build up in the body and start taking effect.

If you are not able to sleep while lying flat in a bed, you could also ask your doctor(s) for a referral to a pulmonologist, hopefully one who has expertise in sleep issues. They may say that you need to have some breathing tests, and maybe an overnight sleep study. They might say that you could use a machine to help you breathe better overnight. I use a BiPAP/AVAPS machine which helps me overnight. I can also use it during the day if I am having a lot of trouble breathing.

If there are any other neurologists in your area, you could try getting a second opinion. Going to Mayo Clinic might be good, yes, but another option might be to see a neuromuscular specialist at a University hospital if there is one in your area. That might be closer than the Mayo Clinic, and perhaps you'd be able to make that trip a bit easier than the 1,200 journey to Mayo.

Sending caring thoughts your way,
Erin