IBM origin

I am suffering from a disease which I assume to be that commonly referred to as IBM (inclusion body myositis). Although I do not have access to the (biopsy based) chemical analyses, the totality of clinical manifestations unambiguously leads me into the conclusion that we should talk about this disease only. Moreover, one series of the sensations, though incomprehensible for me, at the beginning of the noticeable actions of the disease, clearly indicated its origin.

Unfortunately, I was unable to find doctors who would try to find ways to treat IBM. So far, my letters to doctors in both the UK and the US have remained unanswered.

Can someone name a doctor who is responsive and interested in patients?