Posted 9/2/2014 6:26 AM (GMT -7)
I have a strange collection of symptoms, including severe migraines, loss of balance, numbness and tingling, episodes where I feel like someone turned out the lights, general weakness/tiredness, inability to concentrate or remember things (I always prided myself on my wonderful memory!), and this awful, violent myoclonus (not hypnic jerks, but full blown body "crunches" that have been so harsh as to tear my knee tendon) that will go on for hours - all of this is episodic.
Everywhere I research, MS is mentioned as a possibility. My MRI turned up negative, but when the neurologist asked for a contrast MRI (and they only did my head, not my brain stem or spine), the procedure was not approved by my insurance company as "medically necessary." (And if I went back in my history, there are all sorts of other indications of auto-immune issues, such as arthritis starting at about age 20; menopause at age 38; abnormal reactions to medications, +ANA, HLAB27 marker, etc.)
I've taken a video of one of the myoclonus episodes, which finally raised my rheumatologist's concern.
I'm not sure what this is: MS, lupus, a non-specific auto-immune disease. How do I move past the "neurotic female" assumption and get some real medical attention? I find it very difficult to function when I either have a migraine, can't see, haven't slept in days, or hurt all over.
Thanks - I appreciate any suggestions!