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[FONT="Comic Sans MS"][SIZE="2"][COLOR="DarkOrchid"]Dear Dutchess,

I know it is scary as I remember those days rather well. I'd push the muscle biopsy on the doc if he suspects Polymyositis. An EMG is really a test to determine nerve damage which is something you very seldom see with straight up Polymyositis---unless he might be looking for something else. My doctor was also concerned about and wanted to rule out MS, hence an EMG and an MRI. Sometimes a doc learns MORE by ruling stuff OUT than by ruling stuff in. Personally, an EMG is not a particularly favorite test of mine.

Polymyositis is NOT a killer disease, but it definitely can be quite disabling. Typically, those who get it have about a 20% chance of death---so it is very rare to die from Polymyositis itself. However, the battery of medications that you sometimes have to take is another story. Even just with prednisone, you must be very careful about infections as it works by stomping down your immune system. We sort of NEED our immune system to fight off infections.

Weakness and a 'burning' type of pain are the usual symptoms of Polymyositis. Many people say that they've had the burning pain while many doctors say that it is not all that common. I had the burning pain---sort of feels like you've done one too many sit-ups. Do you remember your P.E. teacher saying to you to "Go for the burn"?

Lupus CAN be behind Polymyositis sometimes and I'm told it is not always easy to make a diagnosis of Lupus. While a blood test DOES shed some light on things as far as high CPK levels---a telltale marker of Polymysitis, a muscle biopsy is the most informative test. That has been MY experience as I certainly don't claim to know as much as your doctor. I just find that they're NOT all that great at listening sometimes. I've had to really push mine somedays. I've even switched doctors because I didn't feel as though they were aggressive enough with MY concerns---such as trying to get out of a chair.

I did have tremors---mostly because I was trying so HARD to do a certain thing or whatever, but the muscle just wasn't there and so my arm or whatever would just sort of quiver. I suppose that your joints and tendons must then compensate for muscle damage---hence the tendonitis, that's only common sense I guess. Falls with Polymyositis ARE definitely an issue. Obviously, you must be VERY careful.

This is something you MUST stay on top of as Polymyositis can progress to a degree that is extremely difficult to come back from. Personally, were I to do this all over again, I'd be CAMPED OUT on my doc's very doorstep until every available option has been DONE. Prednisone is not a pleasant drug to take and there are many side-effects that are quite harsh, which is probably WHY your doc has tapered you off of it. How long have you been taking the prednisone if I may ask?

Peace Always,
the DragonLady[/COLOR][/SIZE][/FONT]
Thank you ladies for your information and support. I went to the neurologist yesterday. He did a full work up of neuro tests and said that my left eye is drooping. He said "is this new"? I said well I guess so, I never had had a drooping eye before! :dizzy: He wants me to bring in past pictures so he can see if it new. He ordered another round of blood tests including the cpk levels, myopathy study, neuropathy study, etc. I have to go for two more MRI's today to test my spine and lower back. He has ordered nerve conduction tests and EMG. He said if he couldn't figure out what is wrong with me then he would send me to UAB (world renowned hospital for research and unknown illnesses). He said I definitely have something going on, he just isn't sure what it is. He said MS is definitely high on the list of possibilities. I am just so tired of doctors. I don't want to be a guinea pig. I do see an autoimmune specialist. He is one of the best in the country I am told and both doctors are very aggressive. I take a multivitamin and also take antioxidant/mineral supplement. My meds are 40 mg prednisone, 200mg plaquenil 2x a day, 81 mg aspirin, and so far that is enough for me. I knew about FMLA but it is so hard to want to work and feel like crap. :mad: I just want to know what is going on. I feel like a diagnosis (no matter what it is) is better than living in the world of "we don't know what is wrong with you, but you definitely have something". :confused:





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