timer lady
Queen of Hearts
& I'm on pins & needles (really bad joke - sorry). Either everyone is satisfied with the treatment course, neither impressed with my level of improvement or at least status quo & a consideration of adding a chemo drug to take out my immune system; or we move on to more invasive testing (i.e. cerebral arteriogram & brain biopsy). Personally, I'd like to hear that the current treatment course is taking care of things.
Unfortunately, that doesn't seem to be the case. Or maybe I'm too impatient. For one thing, I'd like a definitive diagnosis - at this point the neurologist, rheumatologist, infectious diseases doctor & my GP are all treating symptoms. Mostly because they are stymied. And if you're that stymied I don't think you should be digging about in my brain or taking out my immune system. It's fragile enough as it is on the prednisone.
The latest & greatest considerations by neuro doctor & rheum doctor is myathenis gravis or CNS primary vasculitis.
Probably just stress.
Results & symptoms fit many disorders that no one will say with authority - this is it!
Isn't that special? Guess I'm just a bit tired of the poking prodding; I'm tired of just how homebound I've become; how little sleep I get. Just 6 months ago I was a vital 50 y/o woman on a golf league, taking piano lessons & caring for a home & a couple of tweedles. I want, at the very least, a portion of that back.
Please keep a good thought that the treating doctors have the wisdom to continue treatment. That my health maintains at this level; I'd hate to start slipping back.
Unfortunately, that doesn't seem to be the case. Or maybe I'm too impatient. For one thing, I'd like a definitive diagnosis - at this point the neurologist, rheumatologist, infectious diseases doctor & my GP are all treating symptoms. Mostly because they are stymied. And if you're that stymied I don't think you should be digging about in my brain or taking out my immune system. It's fragile enough as it is on the prednisone.
The latest & greatest considerations by neuro doctor & rheum doctor is myathenis gravis or CNS primary vasculitis.
Probably just stress.
Results & symptoms fit many disorders that no one will say with authority - this is it!
Isn't that special? Guess I'm just a bit tired of the poking prodding; I'm tired of just how homebound I've become; how little sleep I get. Just 6 months ago I was a vital 50 y/o woman on a golf league, taking piano lessons & caring for a home & a couple of tweedles. I want, at the very least, a portion of that back.
Please keep a good thought that the treating doctors have the wisdom to continue treatment. That my health maintains at this level; I'd hate to start slipping back.