Bluesky, I'm sorry you are still not diagnosed after all this time. It can take a very long time, unfortunately.

I won't bore you with the details of my MG past. Too long and complicated. But one thing I know is that once you've been to the Mayo Clinic and they say they don't think or aren't sure you have MG, other neurologists aren't likely to go against their opinion. Have you given these other neurologists the notes from your Mayo appts?

AChR antibodies don't appear for no reason. The chance of you not having MG, along with your symptoms, would be pretty small. What antibodies showed up (i.e., binding, modulating or blocking)? Have you asked these other neurologists to explain to you why you have positive MG antibodies . . . and supposedly don't have MG?!

When was the last time you had antibodies done? Maybe it's time for them to be redone.

The degree of muscle fatigue in people with MG is highly variable - from morning to night or activity to activity. It's not the degree that's important; it's the fact that it's FATIGABLE muscle weakness that is. It's like these doctors saw those gross exaggerations of MG/ptosis in their medical books and that's all they expect to see. That's the problem with seeing "non-expert" neuros. They don't have enough experience with LOTS of MG patients and their presentations.

Have you tried taking photos of your face when you are rested and then when you are worn out? Make sure your face is in the same position both times (not bent forward, etc.). I don't know how good you are on compupter but you can then line up the before and after faces with lines from the hairline, bottom of ear lobe and bottom of chin to show that the faces are the same size. Then draw lines from, for example, the eyebrow of one side to the same eyebrow on the other. Or from mouth to mouth or nose to nose. If your face is drooping, it will be incredibly obvious - even to your neuros.

You can go to a neuro-ophthalmologist to ask them to see if them can "prove" you have fatigable weakness. Some of them still do the Tensilon test. If they do, take someone with to take photos of your face before and after.

Have you been to a pulmonologist to see if they can assess any neuromuscular weakness with your breathing? If not, do that.

What you are doing is compiling more evidence (or not) of what is going on. It may be MG, something else or MG and something else.

Bottom line is that you have the RIGHT to have a timely diagnosis and treatment plan, which you have not had. Being on Mestinon without a diagnosis is stupid (not you being stupid but the doctors). It's like they never come up with a diagnosis right away for people wth MG.

Mestinon absolutely will affect PFT's if you are doing okay at the time. I have had them off and on Mestinon and there is a fairly big difference. And I bet that you didn't have the FULL PFT's. Did they do MIP and MEP? Gas exchange? If not, get yourself a pulmonologist, away from the neuro's group, and have them assess your breathing OFF of Mestinon (if it won't risk you not breathing well).

Whatever is going on, it's not normal right? Maybe if you tell people here where you live, they can give you the name of a better neuro to help you.

I hope you can get help. I do know what it is like to go through the ringer for years when it comes to being diagnosed. And there are people who don't even post here whom I know of who are so bad off and have gone through this for decades who are still hanging in there. Just fortify your spirit and cling to what is good and you can get through this.

Annie