Quote:
Originally Posted by cyclelops
I have an AI thing going on. Right now they call it Sjogren's, but who knows. I deal with a lot of vasoreactive type stuff. I have had a minor labial salivary gland biopsy with a lot of lymphocytic infiltrate in it. My muscle biopsy was neurogenic myopathy, not inflammatory. I would wonder if you could have polymyositis or something similar? I can barely use my upper body. I feel like my head will fall off and I can't raise my arms above my head without getting an awful headache 36 hours later. It isn't disuse, since I force myself to do stuff, like painting or cleaning, but, it really causes me issues. I always have some 'itis' going on....bursitis, tendonitis etc. I was on pain meds, went off for 6 months and ended up back on a low level opiate, which is OK....it doesn't plug me up too bad. My ANA has been high for a few years now. (They can't get an accurate lab when on IVIG). I am on IVIG.
I am wondering if they could try treating you with IVIG to see if it is effective for you?
These inflammatory, autoimmune things are sometimes very hard to pin down specifically, yet are very difficult to deal with.
I guess if they are offering you more diagnostics, I would tend to say, go ahead and have them.
Hoping you stay feeling 'ok'.  |
Polymyositis was the first consideration after having the muscle biopsy, but ruling out a paraneoplastic vasculitis is the first priority. Unfortunately, my HMO will not authorize the CT scan needed to rule out a mass. My rheumy doesn't want to treat with immunosuppressants until we have a more definitive diagnosis, which would mean going out of state to someone with the knowledge to figure this out.
In the meantime I lie around at night trying to figure out what I feel happening in my body, thinking I might be brilliant enough to solve this myself. The more I read, the more confused I get.
I think I'll try the nutrient suggestions given by Mrs. D and others that I've found in the forum. None of it is new. I gave it all a try last year while working with an herbalist. Maybe I (and he) just gave up too soon.
Hang in there!
Athena