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janalin79

Polymyositis and Scleroderma

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Hello, all! 

 

Recently, I've noticed chronic (3+ months) muscle pain in my quads and biceps, as in, they are tender to the touch.  I feel (and the pulmonologist agrees, he's very knowledgeable), that it may be polymyositis.  My rheumatologist checked my CPK levels and they were elevated, but not much (150). 

 

She's sending me additional lab orders to see where the protein is leaching from, but if I'm already on immunosuppressant therapies, will I be able to get a proper diagnosis?  I'm willing to advocate for myself, but I need to know what further testing I'd need...nerve conduction, biopsy?

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Hi Janalin,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering possible polymyositis symptoms. As this disease can overlap with scleroderma, we do recommend that our members, if possible, consult a listed scleroderma expert, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise.

 

I do have the Anti-PM/Scl antibody, but thankfully have never developed polymyositis. Please note I have no medical training, but the fact that your rheumatologist is doing further lab orders is encouraging and should mean that she can decide which further tests should be done, depending on the results. Unfortunately, autoimmune conditions are very difficult to diagnose and it can be a fairly lengthy process. 

 

Kind regards,

 


Jo Frowde

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ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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