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Forum Name: Rheumatology Topics

Question: Diagnosis of Myositis, need treatment


 Shimmer - Thu Apr 30, 2009 3:56 pm

I've seen a rheumatologist. Due to symptoms and abnormal EMG, a diagnosis of myositis (probably polymyositis) is almost certain. We have scheduled a biopsy in 2 weeks. My only problem is that my symptoms are worsening and everything I have seen about this disease says that treatment is most effective sooner rather than later. He wants to see me 3 weeks after my biopsy. This means I will have to wait 5 weeks to even begin treatment. I let him know of new and worsening symptoms. His office just told me to see my primary physician. I haven't done so yet because I know there's nothing they can do for me. I need treatment for this disease. I need to be put on corticosteroids, probably Prednisone. Would it be wise to find a way to get on Prednisone before the biopsy? I feel like my heath is suffering and will suffer more the longer we let this disease progress. I am now experiencing dysphagia, aches in my chest, cough, muscles in my arms and legs are worse. I am concerned about lung involvement which will make treatment more difficult and will not help my prognosis. I feel I need help now and am being ignored. Any ideas on how to proceed?
 Tom Plamondon PA-C - Wed May 06, 2009 9:27 pm

User avatar Hello,

Because your symptoms are worsening, it is important to follow up with your family physician as soon as possible or if your respirations (breathing) or difficulty swallowing are compromising your ability to get enough oxygen or nutrition go to emergency department.

Along with polymyositis, I would include in the differential diagnosis myasthenia gravis, ALS, Guillain-Barre, and multiple sclerosis -- in other words consider neurological disorders as well as rheumatological problems.

Take care and keep us update on your progress.

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