IIM: What were your first symptoms?

For me, it started with weakness in my arms and legs. I've always been a relatively active person, but I started having trouble lifting things and getting up out of my chair. It was finally the rash I started having a strange rash on my elbows and knees that had me off to the GP for a dermatologist referral.

I had the weirdest rash on my eyelids of all places. At first I thought I had just rubbed my eye with dirty hands and it was caused by that, but then it didn't go away. I also started to get patches on my elbows which I didn't notice at first because it isn't something you regularly look at in the mirror. I didn't so much notice the weakness, it was the rash that made me seek medical attention, hard to ignore and make excuses for visual cues.

Hi, my name is Deja and I've had lower extremity muscle weakness, abnormal gait and pain for 16 years. It began when I was 36. I chalked it up to my spondylolisthesis going symptomatic at that age. Fast forward 16 years, and the leg weakness, abnormal gait and pain has gotten progressively worse. I have marked fatty atrophy is my calf muscles, which I found about through an MRI for a knee injury. That marked fatty atrophy is what I went to the dr to get checked out. She sent me for an emg/nerve conduction test. I was 100% sure it was due to my back, and was fully expecting the results to indicate a bilateral lumbar radiculopathy in my lower extremities. I couldn't have been more wrong. I was certainly not expecting what the specialist said next. That this is NOT due to my back, that he does 10 studies a week, and has never seen this before. That what he's suspecting this to be due from is so rare. He said he suspects I have idiopathic inflammatory myopathy. That the results and pattern only fit this. This was the first time ever even hearing about this condition. So, I'm in the beginning stages of trying to get to the right doctors to get the right diagnosis.

That he does 10 studies a week