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Originally Posted by Ravenclaw
How awful! I can't believe this happens over and over again.
By the way, a few years ago I had the exact same experience. The neuro said I was I was exaggerating, the pulmo said I was going downhill and really needed respiratory support soon. At the same day! So what did they do: they argued about me (she's just has a lack of initiative versus she has a serious illness which gets worse by the day!), above my head (i was lying in the hospital).
I was soooo upsaid, because, it's a neurological disease so they took the neuro's opinion more seriously. With a bunch of co's and nurses watching.
They left me, conclusion the pulmo didn't know anything about MG and i was a faker / depressed little girl. I was in shock, and when my family came to visit I cried soooo much.
(That was my "luck": all combined it caused me to havea total crisis, so they could say it was my lack of initiative that I turned blue  )
I do understand how awful this is. Maybe you can get the pulmo's report and take it to another neuro?
What was your result of the pulmotests?
By the way, I learned that mg can cause fluctuation in your breathing problems, so having a normal bloodresult (co2 o2 po2 etc) doesn't exclude breathing problemes.
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This is part of the problem, pulmonologists don't realize the amount of ignorance neurologists have regarding respiratory problems in the disease they manage.
In fact, I myself am repeatedly surprised at how uninterested neurologists are in gaining a better understanding (which I have no doubt they could easily master with a short course, as most of them are highly intelligent people) of those issues.
And I am as surprised at the way they can tell you with confidence in the same sentence that they have no understanding of respiratory problems, yet they have no doubt that you have none which are significant.
Or the way they can repeatedly ignore or distort the advise of respiratory physicians.
What can be done to change this? I am not sure I know, other than (possibly) repeatedly showing them the consequences of the combination of this ignorance and confidence.