Lupus Support Group

I'm glad that you are seeing a neuro, I was going to suggest that one. With autoimmune disease there is a lot of overlap, boy do I know that!!! lol I hope that you are able to find out something very soon, but I can tell you from experience, it takes the neuro just as long as it does the rheumy to figure out what is going on. It took me almost 2 years to get a definitive dx of MG that was causing a lot if not all of my muscle weakness. Not saying that is your issue, it is the rarest of autoimmune diseases. The back thing does deserve an MRI. I found out an awful lot with my MRI and it's funny, as soon as I knew what was causing the pain issues, they lessened. Weird, but true. I have this thing that I can deal with the pain or put it out of my mind as long as I know what it is. That doesn't work all the time when you have overdone it, etc. but generally I just feel better knowing. I wish you the very best and hope you get that MRI soon. If you have any questions about the testing the neuro would like to do on you, feel free to email me as I have been thru the gauntlet of tests that they have, fun fun.

Thanks reddutchgirl!

Your symptoms are so similar to mine. I get weak and lightheaded and my legs and arms feel like there is mud running through them. I thought for sure something was going to come back from the tests I had at the neuro. But all normal so far. The test for MG is very accurate and its rare to have a false negative. People that test negative for MG sometimes can test positive for the MUSK antibodies but if you are ok on the blood test it is very unlikely you have it. Even though it might take a little while to diagnose some things, others can be ruled out very quickly after an EMG and blood testing. I think you will feel alot better after you go. If everything is normal on my end for now they say it could be Fibro. At first I was like no way Fibro can't be this bad but now I see more and more people that have the muscle weakness and heaviness, and exercise intolerance along with pain.

The antibody blood test is not that accurate especially with the generalized form of MG, which is what I have. Interestingly, I tested positive for the ACHr binding; started feeling better then tested negative on the retest. Got worse again, more NCS and EMG. The definitive and most sensitive test for MG is the single fiber EMG but they only have a small number of neuro's qualified to run this test. This is why I'm now being seen at Duke. My test results were the worst of all 300 patients that she has seen and that was a few months after the second blood test came back negative.