Maniac, What they should have done is an arterial blood gas test. And MIP and MEP, or at least a bedside spirometry. Did they even check your O2?

You don't have to wait that long. Surely there must be someone who can see you sooner. Whatever is going on is not normal. You are doing fairly poorly. Please go see a pulmonologist as soon as possible. They can determine if the shortness of breath is due to a neuromuscular problem.

winic1, If you would care to do another post, I will address those issues there. This is Maniac's post and she needs only her issues addressed.

That's kind of you to say, Maniac (about being your doctor). The fact that many neurologists don't keep an open mind, don't stay objective, and are so dismissive of patients (especially women—yes, the 7 year wait is sexism) is very troublesome. Whatever is going on, you deserve the best possible care and to find out what is wrong. There are good neuros out there.

Can anyone here recommend someone for Maniac?

You should also have your vitamin B12 tested for. And thyroid, if those things haven't already been done. An adrenal problem is not common, but you can always ask an internist to do a morning, fasting cortisol.

Pulmonary hypertension also causes shortness of breath, but you have other symptoms that would indicate something neuromuscular.

I really hope the next neuro takes you seriously and is more thorough. The fellow was right about a muscle biopsy, but that usually happens after other testing is done, such as a SFEMG and the MuSK antibody test.

Please don't hesitate to go back in if you become worse!


Annie