Myositis is not easily diagnosed. I had 2 biopsies, 2 emg, numerous CT scans, xrays and MRIs not to mention bloodwork every month. I have Polymyositis and it was not confirmed until I went to the Myositis Center @ Johns Hopkins.

My symptoms started in 2004 and I wasn't confirmed until 2007. After seeing my primary care, neuro and rheu drs. Ask for a second opinion. Ask to have your case refered to Johns Hopkins to see if they will see you.

My CK levels are almost ~4K and has been as high as 16K. That is a major indicator in the diagnosis.

When I was diagnosed with DM several years ago, via biopsy , I had slight redness around my nose with no itch. The angry itch and darker rash have happened just this year. Even though I have the angry itch and darker rash, my CPK levels are within the normal range. Good luck.

I agree, my CPKs were 16,500 when I entered the ER ..I had my biopsy done when I was admitted..and mine came back as positive for PM..
I would think having muscle enzymes checked would be a very important thing if you haven't yet.

When I had my muscle biopsy, the diagnosis was not clear cut; there were some indications suggesting IBM (rimmed vacuoles) and the rheumatologist(s) were hesitant, but my neurologist reviewed the pathologist's report (differential diagnosis) and firmly concluded that it was PM. My biopsy was a major one and the lab analysis included all the works (it took a couple of weeks before it was finished).

It's sad but unfortunately a reality that diagnoses are not always clear cut. Sometimes wait and see is all you can do.

And actually, in the short run...the treatments are basically the same for IBM and PM. Hallmark therapy is steroids and immunosuppressions.

Frustrating yes......we're here for ya.