Hi - thanks for the words. that was exactly one of my questions to him...if i don't have MG that would make sense, but what about a CMS. how does he explain the muscle biopsy that states over population of my nuromusclar junctions and that the analyst believes it supports a congenital myasthenic syndrome. and this is what he said...get this..." i know Dr. Bla bla and he's the kind of guys that if he's told it has to be something then he tries to make it fit in the box. he was just trying to be nice...what he saw
could be normal for a woman your age."
==btw let me state my age is 33. i look like maybe i'm 25. infact i'm gonna post a picture from a good day, so you can see how "old" i look...lol...see below. u can still tell a little bit that my left eye is smaller/droppy compared with my right; but i try to over compensate by tilting my head and putting my right side towards the camera==
i almost lost it at that point i felt so shut down and couldn't believe he would talk down his own collegue like that...i mean really does he think this analyst spent his life getting his phd specializing in neuromuscular pathology and then spending the entirity of his working life gives "drive thru" results. hi Dr. bla bla i'd like to order a side of MG, can you make that work...WTF...that doctor was so arrogant I don't even know how there was any space in the rest of that room with his big head. so he said, i am going to request to see the biopsy myself and will let you know what i think!
please as of today, i am feeling much better about the situation and i don't care what he thinks. he's full of himself and has no regard for the practice of medicine or patience.
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Originally Posted by AnnieB3
No, it wasn't your fault at all. And I'm sorry the appointment went that way.
I am seriously starting to wonder if neurologists get some kind of pay back by not giving an MG diagnosis. Or any diagnosis.
While this neuro "may be" an MG expert, he is NOT a CMS expert. How did he explain the biopsy results? Or did he think your muscle is depressed too? 
How old are you, if I can ask? I'm 52, have MG and am depressed. Why am I depressed? Because I have MG and it won't let me do what I want to do!!!!
His conclusions were not very scientific, especially since he didn't appear to give you good enough reasons why you don't have MG. You may have one of the CMS's - didn't he even consider that? It is SUPPOSED TO BE considered when someone is seronegative and the clinical exam (and biopsy) are positive for destruction in the NMJ.
I literally cannot handle how you were treated. You weren't at fault and this guy was "showing off" in front of the students or residents, whichever they were. I'll bet you an EMG he was.
Do you have a full copy of the biopsy report? Are you going to send it and your biopsy slides to UC Davis and be seen there?
Listen to your instincts. There is something going on beyond any "mental" problem!  All neurologists aren't psychiatrists first but they sure do act like they are.
Gather evidence. Take a deep breath. See a neuro-ophthalmologist if you haven't. See a shrink to prove you're fine. Get breathing tests. Get some ice cream. Get that biopsy result. Then go get some help!
Annie |