Good morning @johnbishop …..many thanks for your kind reply! I was just recently diagnosed with the Dermatomyositis after having an EMG 2 weeks ago and it was also discovered that I have the sensorimotor poly neuropathy as well. The DM is a relatively rare disease with 1 out of over 100,000 people being affected. That’s why it took sooooo long to identify.
My neurologist and rheumatologist both concur that the polyneuropathy is inherited. I see my rheumatologist tomorrow to discuss possible treatments. Like you, I have a host of other conditions such as Parkinson’s, Lupus, type 2 diabetes, Myasthenia Gravis, Celiac disease etc. Over 25 years ago, comprehensive genetic studies were done on me at Athena Labs in Boston. Evidently I am somewhat of a medical oddity given the fact that I have so many conditions at one time. I’ve been written up in a few medical publications and if I’m ever hospitalized, I can usually count on a few interns asking if I would mind sharing info about my unusual medical history. I so strongly agree that we need to learn everything we can about the disease(s) we live with and how to try and live a fulfilling life in spite of what ails us. I was an early onset Parkinson’s at 42….I just turned 75….and I told my Dr that yes, I have Parkinson’s, but it doesn’t have me!! That’s my attitude towards whatever I deal with. I wish you all the best with the challenges you face and again, thank you for taking the time to write. Warm regards, Susie