Hi,

I may be missing something, but I went over your thread, and I am sorry but I did not come up with any symptoms of MG.

neuromuscular disease can cause hypoxemia, but it is usually relatively "late in the game" and not as severe as yours. (I mean someone with such a degree of hypoxemia due to neruomuscular disease alone would have to have a very high level of CO2 and near paralysis of their respiratory muscles).

don't know what school your pulmonologist was in, but in my school it was obvious that if someone was not breathing due to paralysis of their respiratory muscles it would lead to hypoxemia. what do you think was the reason for death from polio? and why did they develop those "iron lungs" which were the first mechanical respirators?

what you are describing could fit sarcoidosis (what they think is an enlarged thymus could be enlarged lymph nodes and it is not that trivial to tell), which is a treatable disease.

obviously, I do not have all the details and you seem to have been in the best places, but the way you desribe your management sounds very unreasonable (to say the least) to me.

I have a patient who was diagnosed with pulmonary embolism, and was treated for that for over a year. she was seen by the best experts, who coppied this diagnosis from the previous letter. when she came to me, I insisted on hearing the way she describes her symptoms (which she was quite reluctant to tell me initally because she said that I have it all written and she is tired of doctors that don't listen any how to what she has to say).

to cut a long story short, she never had a pulmonary embolism, and the reason for her respiratory problems was neuromuscular disease. and the clue was that one would expect a much more severe degree of hypoxemia in a massive pulmonary embolism, like she supposedly had.

the reason for this error was that there was a technical problem in the CT scan that she had, and it appeared as if there was a bilateral blockage of blood flow.

interestingly when I called those involved in her care and told them about this, they were all concerned that she might sue them. when in fact her husband said to me that he is really glad that she got this treatment needlessly, because thanks to that she came to me.

he was really glad that I encouraged her to go back to work, and stop feeling sorry for herself, instead of telling her that she is extremly ill.

he told me that they actually wanted to consult a more famous physician then me, but since their insurance would not cover that, they planned to come see me and then say that I couldn't help them and go to that expert instead.

why am I telling you this, because I myself was initially managed by the "best" but at some point I realized that I need to find a simple physician like me, who is not too busy writing papers on how he treats patients, and actually has time to take care of them.

and once I realized that and found a neuorlogist that is just a physician and not a world leading expert, my mangement improved significantly.
and also my current pulmonologist, who does not see himself as an expert in anything, was the first one to actually check and see my breathing, and not assume how it should be.

so, I think that you need to find a good internist, that still remembers what medicine really is, and have him go over your history, results of tests etc.
it could be sarcoidosis, it could be something else. but it would be a shame if it something that could be treated and was missed.

I am starting to think that an article I recently read in JAMA called- "common sense is not so common in medicine any more", is much more true then I thought it was.

and it is not just the neurologists that forget sometimes what the brain (their organ of interest) is meant for. (sorry for being a bit sarcastic).

alice