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I had to have both pituitary surgery and have my adrenalsAddison’s disease Adrenal gland biopsy Adrenalectomy Catecholamines - blood 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
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?
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?