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Old 11-24-2011, 03:53 PM   #1
Join Date: Jun 2010
Location: Ont Canada
Posts: 84
pattianne24 HB Userpattianne24 HB Userpattianne24 HB User
Polymyositis- family doctor doesn't have a clue about this illness

I was diagnosed in 1995 with polymyositis, through a biopsy and blood tests and EMG. I read everything that I could about this illness. What I understand is that you can go into remission for periods of time, I have done that. On several occasions due to stress, death of 4 family members in 4 years, my CPK has gone up and my rheumatologist has put me back on prednisone or methotrexate or both. I have never heard of a cure. What I understand is what damage that has been done to muscle is permanent. I have a family doctor, live in Ontario Canada and because it is so hard to get a decent family doctor I have to put up with one that thinks she is a know it all and said to me that "I do not have a serious illness that could be fatal". What an insult. A few years after I was diagnosed, I joined a support group on line and befriended a wonderful woman who was only 29yrs old. She did not respond to drug therapy as I did and she died within a couple of years from complications of polymyositis. I will never forget the email that I received from her mother giving me the news. We had been intouch weekly for long periods of time, and I felt a great loss when she passed. I do feel very lucky that I did respond to drug therapy, but I to this day feel fatigued, have muscle weakness, and live with chronic pain. I have run into many family doctors that are so lazy that they don't even look up in their medical books what polymyositis is. At least if you have a patient with this illness I would think that it is important to treat them, that you understand what they suffer from. Why I am so upset is that my rheumatologist is in his late 70's, and is working part-time now and will soon give up his practice all together and I am left with this family doctor who looked at me in the face and made me feel like I am a complainer, that I don't really have a serious health issue. Am I wrong here. I will see my rheumatologist in January 2012, and I will be discussing this with him but in the mean time just wanted to get some others point of view on this matter.

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