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Old 11-24-2011, 02:53 PM   #1
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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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Old 07-07-2012, 08:54 AM   #2
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Re: Polymyositis- family doctor doesn't have a clue about this illness

I was just recently diagnosed in May of 2012 with Polymyostis. I had been having symptoms of muscle weakness since November of 2011. Which my family doctor contributed to just being fibromyalgia. He couldn't figure it out and was going to send me to a neurologist after 3 months of having muscle weakness and not being able to pull myself up. I wound up going to an Emergency room where they atmited me right away because my muscle enzymes were 8000. So when they ran the other tests an EMG and a muscle biopsy it confirmed that it was Polymyostis. I have gotten so bad that I have to have help getting around I can't do anything on my own. Please make sure that you find a good reumotologist and they may even refer you to a neurologist to which will be helpful as well. They have started me on a medicine called methotrexate 2.5mg and I take that 8 times 1 a week and predisone 80 mg everyday. Plus I do slot of physical therapy. I really hope this helps you out just a little. And I hope that you are doing well.

 
Old 07-07-2012, 09:20 AM   #3
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Re: Polymyositis- family doctor doesn't have a clue about this illness

I hope that you will get some results now that you are on the proper medication. I was lucky, I found a good rheum very soon after the symptoms started to appear. I don't know if it is just me but I have had one after another auto immune illness since being diag. with polymyositis. I have psoratic artheritis, a thyroid problem, and just a few weeks ago found out that I have facet disc disease. I was in perfect health till my late 40's and then just one thing after another. Hope you do well now.

 
Old 02-22-2013, 04:03 AM   #4
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Re: Polymyositis- family doctor doesn't have a clue about this illness

HiPattianne24, A neurologist once told me that autoimmune diseases tend to run in packs. Frustrating isn't it? Hope you have been doing better.

 
Old 07-12-2013, 08:24 AM   #5
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Re: Polymyositis- family doctor doesn't have a clue about this illness

Has any of your Dr's tried antibiotic therapy ? I read a long time ago that they said it was helpful but its not supported by FDA ....

 
Old 07-12-2013, 08:58 AM   #6
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Re: Polymyositis- family doctor doesn't have a clue about this illness

so sorry for what you have to go through ... my heart goes out to you all dealing with this ... has the methotrexate worked for you ? My mom has been on it for 1 1/2 yrs and her ck down to 300 which is great for her but the weekness is so bad ... she just started the IVIG treatments in conjunction with the methotrexate and prednisone shes down to 60 mg she couldnt stand how the pred made her feel ... she actually was in hospital 2 wks ago because we thought she was heaving heart issues but they said its just the poly working its magic .... Great ! Have you checked to see if your eligible for a lift chair (maybe u have one already) but I found a site that works with medicare and other insurances to get these things at a very low cost.

 
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