Hi, Mina. I am so sorry for all that your daughter, and you, have been through. I have the same level of disdain for "experts" who can't be objective about the obvious evidence of MG that Celeste has. Her suggestion about a psychiatrist ruling conversion disorder out is a good one.

Has your daughter been to see a neuro-ophthalmologist (N-O) or a pulmonologist? An N-O can assess any ptosis and double vision and show that it is indeed fatigable, which MG ptosis is.

A pulmonologist can assess the kind of breathing pattern she is having. Neurologists are the main MG doctors, as you know, but pulmonologists are essential to have to monitor how breathing is and to see patterns over time. There are specific tests that show neuromuscular fatigability. MIP (maximum inspiratory pressure and MEP (maximum expiratory pressure) show how well someone with MG is breathing in and out.

That would give you one more piece of evidence.

What is truly unbelievable about what they have said to you is that she doesn't have MG because of a negative EMG. First, if they only did a regular EMG, that might not be sensitive enough for MG. They can hardly call themselves experts if they didn't do a SFEMG.

Second, Prednisone's job is to make the signs of a disease go away. It suppresses the immune system that creates the antibodies! I realize that I'm stating the obvious that most everyone here knows, but sometimes it helps to refocus on the REALITY of MG and not on some concocted perception of conversion. An EMG would be normal after taking Prednisone or other immunosuppressants AND after taking Mestinon! That's not always the case but for them to not even acknowledge that possibility makes them appear very closed minded. And downright, well, stupid.

There are so many other things that can cause a normal EMG. And I wonder what her clinical exams have revealed. They often rate muscles on a scale of 5. For example, during my MG crisis, I had a 2/5 on most muscles. The lower the number, the weaker the muscle.

Do you have her medical records? It's amazing what some doctors do not tell you but actually write in their notes!

Many medical professionals, once they have "declared" something, have a hard time back peddling and admitting that they were wrong. That's not an excuse by any means! But they are even taught in medical school not to say they are sorry or wrong.

Have you thought about going to Mayo in Arizona? It's closer to you. It doesn't sound like your daughter can travel very far. And getting on a plane might make her worse. O2 saturation goes even lower in a plane, and she might have trouble breathing.

Another thing a pulmonologist can do is to do an overnight oximetry test. It's done while at home sleeping. It doesn't show apnea but it will show if she's getting enough oxygen while sleeping. It's a VERY important thing to do when an MGer isn't breathing well during the day. Muscles become weaker while we sleep. During my MG crisis, my O2 went down to 66%. Our bodies (brain, heart, and other tissues) don't do well without oxygen! They can even prescribe oxygen for a plane trip if her O2 is low.

Please see if she can get in to see a pulmonologist. They can also do an arterial blood gas, something someone with a "conversion disorder" can't "fake." Sometimes neurologists even dismiss pulmonary function tests, saying we don't give enough of an effort. Yeah, right. I know my normal MIP and MEP and it's obvious when I tank! That's yet another reason to know your baseline breathing numbers.

Also, taking photos of her face (head shot) and comparing to any photo that is similar (or take one when she is relatively better that is exactly the same as the bad one), will also give you more evidence of muscles being weak.

It's really sad that we have to go through all of these hoops when we feel so crappy. It's not our job to prove we are sick. It's the doctors' job. If they were experts, they would've referred you on to other specialists to help prove what is going on so that your daughter could be cared for!

I really hope Mycha gets the care she needs. She should not for one minute let what those doctors have said get to her. That's on them! She's lucky she has a great support system to help her out. Congrats on being such a great advocate for her. Work the system, and document everything!

Annie