Originally Posted by alice md

Hi,

I apologize for the time it took me to answer. I fully agree with everything that Annie said.



There is no should in medicine. Not even in my field of practice (hematology) which is much more accurate. There is what there is. Physicians have to figure out what patients have, and not patients have to fit into what physicians think. very few patients actually "read the book" before they become ill.
More then that, there is no objective test to assess how pronounced MG symptoms are. the severity of MG is assessed by very subjective physician and patient parameters. lack of proper communication (which is quite common in MG, as it is very hard to explain those bizarre symptoms) can easily lead to underestimation or over-estimation of severity. Even more so in the early days of this illness, when you have no clue what the heck is going on.




Even if it so (and your AchR ab. test was negative as was your EMG) this does not rule out MG. It is possible to have MG with completely normal tests. In fact, statistically it is probably so in about 5% of MG patients.



Forgive me for my sarcasm, but I am not sure what that means. My current neurologist is not a "formal" MG specialist. He is just an excellent, caring and dedicated physician. And for the first time in 6 years (after being under the care of the best MG experts in the world) I feel that someone really understands me and my illness.



From my experience, having new symptoms or worsening of your existing symptoms just convinces those MG experts more that your illness is not real. why is that? I don't know, but I am guessing that it makes them think that you are trying to convince them that you are really ill, and that in itself is proof that you are not (sort of a catch 22 situation). But, when you realize that this is what is happening it is a good time to find someone else, as I can reassure you that even if you collapse in front of their eyes, hardly able to breath, it will be further proof for their assumptions.



Many neurologist don't know that there are less common ocular symptoms of MG. They also think that it should not affect the muscles of the pupils or accommodation. Many of them don't let the facts (that it does) confuse them. Many of them look for ptosis only using a single test (which is telling you to look up at their finger). when there are numerous other tests that can and should be done.



To the best of my knowledge, the SFEMG test (they are so fond of) is based on checking the muscles that keep the eyes closed! So, how exactly can he say that those muscles are not involved in MG?




This is exactly what MG is-intermittent!!!




This is very typical of MG.



I don't think he is. It would be fine if he had a reasonable alternative diagnosis to explain your (what sounds like very typical MG) symptoms. But, it doesn't seem that he does.



From my experience, the only good advice I can give you, is find someone else. I may be wrong, but from the way you describe it, this doesn't sound like he is puzzled by your symptoms, trying to find a reasonable explanation, helps you deal with this frustrating situation, suggests at least symptomatic treatment. For him it is either you fit his book or you don't.

You need someone to be your partner in this, not someone that will make you doubt yourself and what you are experiencing. This in itself can be extremely damaging.