Undiagnosed neuromuscular disorder

[rumpled]

I have a very complex medical history that appeared to be mostly endocrine. I had two pituitary tumors (Cushing's, prolactinoma) that made life miserable as well as thyroid and female issues (PCOS, endometriosis, andenomysis).
Needless to say, gaining the weight with Cushing's just made diagnosis prolonged as everyone concentrated on the weight instead of listening, and it took over 12 years to get any attention.

I had to have both pituitary surgery and have my adrenals removed after the tumor grew back. After I had my adrenals out, I never recovered any stamina. Shortly after surgery, one shoulder froze, than another. I went to physical therapy and did all I could, but only got tired. After being told that I was developing no muscle, I then went to my neurologist and had an EMG which was abnormal. I was sent to a specialist. I had another EMG which was normal. The SFEMG was abnormal. I had an muscle biopsy which showed atrophic cells and some other findings, but I was told it was normal. The doctor gave me a partial diagnosis of myasthenia gravis even though I do not have the antibodies (no musk, no acrh). They think I have some steroid myopathy even though my steroids now have been largely in a normal level for two years. Fibromyalgia is to explain the pain.

I am weak. Tired. I do not think MG fits and another doctor I have consulted agrees (my specialist moved so I am left without a doctor now). I was given IVIG and it did not work (may not have had chance as got aseptic meningitis and adrenal crisis after second dose). I do not have ocular issues. My endocrine tests and replacements are largely stable at this time.  Doctors I see agree that something is wrong, but no one can agree what it is to treat it.

Right now, it seems to be progressing where I have more problems swallowing, chewing and speaking. I do twitch and have a family history of ALS (maternal aunt and uncle).

What other tests can I get or who can I see to get help? I am only in my 40's and have all the tools my grandparents use (shower chair, reachers, grab bars etc.) when I used to be an active person and have lost my job with uncertain prospects for the future. My arms are still limited after 2 years. Thank you.
Jennifer

[rumpled]

I had another EMG that came out normal and this doctor is now saying that I do not have MG and further, that I have no neuro-muscular disease.
I am choking even when I brush my teeth.
What other type of disease causes problems chewing, choking, and swallowing... and is not muscles? Is this right?

[gooroo02]

chiari malformation and it always misdiagnosed as something else look into it:)

[rumpled]

Thank you - today I was told to see a gastro doc, no neuro needed at all! That does not even begin to cover my symptoms, just the last one.