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Old 11-02-2010, 11:30 PM   #46
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Re: I was diagnosed with Polymyositis

Quote:
Originally Posted by CROSTHWAITE View Post
Hi Sue,

Sorry to hear about your husband. Things have changed since July of this year it appears that I have been miss-diagnosed and I could possibly have Mitochondrial Decease or Oculopharyneal Muscular Dystrophy (OPMD) I'm waiting for the results from a biopsy. I don't get any pain in my muscles but they ache at times and I'm loosing sensation in my toes. The main problem is lack of strength and fatigue in my legs and at this point in time it is getting gradually worse because I'm not on any dedicated medication for it other than steroids. I'm sorry I can't offer you any advice on this I'm afraid muscle problems are very complicated and it seems that surprisingly very little is known about them when things seem to go wrong. Try to keep positive and keep pushing the medics you could stumble on the right medication which may suit your husband that might not suit someone else. All the best and good luck.

Ken
hi Ken,
thanks for your input, it just openned my eyes as people keep on telling me to go for a second opinion and i was reluctant, with your input i think i should go.
as with you i also do not have any pain as such and i keep onexplaining to doctor and people but getting up from a sitting position or lifting arms over the head is an effort but i shall take your letter and let them test for the same,
thanks again.

 
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Old 11-13-2010, 12:24 PM   #47
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Re: I was diagnosed with Polymyositis

Has he had an EMG at at Neurologist's office? They can tell if the muscle weakness is something really serious.

 
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Old 03-16-2012, 07:21 AM   #48
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Re: I was diagnosed with Polymyositis

Hope that some of the posters are still following this site. I was diag. with polymyositis in 1995. Was started on prednisone and immuran. Within 1 yr. of taking these drugs I was diagnosed with cancer of the endometrium. I had to have an immediate hyesterectomy. They said the cause of the cancer was immuran. I started taking methatrexate and it has helped. Since then my husband died and the stress had a direct effect on my health. Today still alone, and struggling, I am in a deep depression and have pain that is so severe some days that all I can do is go to bed. What I have noticed is the difference in weather effects the level of pain that I feel. Just asking if anyone else has had problems of depression with this illness.

 
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Old 07-12-2013, 09:12 AM   #49
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Re: I was diagnosed with Polymyositis

Hi shar.... can i ask how your antibiotic treatment is working ?????

 
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