Blaming the disease

Since my left hand became weak at the same time my polymyositis flared over a decade ago, it has never improved, even a little. I kept telling my PTs (physical therapists) about it but they just said the same thing -- do the open/close exercise, squeeze a stress ball. I did and still do but nada, nil, zip.

My left hand would occasionally feel numb. The numbness would go up to my elbow and sometimes my face, and I'd be terrified thinking that I was having a stroke.

I even wondered if I was developing inclusion-body myositis (ibm is another kind of idiopathic inflammatory myopathy that initially weakens the fingers and, as of now, progresses because it does not respond to treatment). My left fingers often hyper-extend to compensate for the weakness.

When we attended the annual myositis patient conference by TMA in September 2016, we noticed that my left hand looked the same as the ibm patient attendees -- fingers hyper-extended. Can I also have ibm?

I asked Dr. Steve Ytterberg about it during the informal Q&A session for polymyositis patients and his answer was satisfying, personally, with regards to getting information.

His answer was that it was something else, that it is easy to blame the disease but no, it is not a long-term complication in polymyositis. It's possibly a pinched nerve (he said this while pointing to his neck) and suggested testing like EMG to find out for sure.

Question answered. One less thing to worry about, finally.