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Have you seen a neurologist? If not, why not?! Your pulmonologist needs to be working with a neurologist to figure this out. A MG expert would be best.
Situations such as yours makes me wonder why doctors even went to school in the first place. Breathing well is essential to life, and to drop the ball like this is not only stupid, but cruel.
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Annie, I just wish Neurologists were all given a course of "listening to Annie", it would certainly help them.
I was just dismissed by my Neuro. At an earlier meeting she was concerned at my shallow breathing, so sent me to a Mensendiek therapist. Now at this last meeting my breathing was slightly improved as the weather was cooler, but not much. The therapist had said simply that the breathing issue was a symptom not the cause. And the final word of the Neuro... it is not in my field, go back and speak to your GP!