I was diagnosed with polymyositis in 2005. My CPK was 17000 when they diagnosed. I've gone through methotraxate, 120mg prednisone, since 2008 I'm getting cyclophosfamide 1mg every 2 months. They tried to wean me off the cyclophos, but it does not work not even waiting 3 months before the next dosage. What is the long term effect of the cyclophos?
I am wondering how you were feeling before your diag. I have not got one yet, after almost two years. All my blood work has been normal, multiple tests, etc. I finally had a muscle biopsy that was abnormal and they are referring me to a muscle disease special. at UCSF. I feel miserable. One dr., not a specialist in this area, thinks it is PM from my biopsy results. The wait for for all the appt. is horrible. Can you tell me your journey? Thanks, M-
I went thru years of being treated like a guinea pig,being dismissed, misdiagnosed, over tested with invasive & imaging horrors and knowing every time that the DRs hadn't gotten it right. Finally had the time to resume my med studies & figured it out myself. The elevated CPK , muscle biopsy, creat &.K abnormalities, heart palps & SOB with any exertion,& other symptoms. But it took almost 2 years before I was willing to get back on the Medi go round of new DRs & THEIR IDEAS. Took another year before MY DOCTOR walked in after READING MY CHART!?!? And asked a few questions NONE of which were .. NOW LETS SEE, LAST TIME WHAT THE OTHER DR DO? or SO...WHAT ARE YOU HERE FOR? He's worked with Drs without Borders for years & didn't depend on diagnostic tests for his diagnosing ability. He asked about lifting my arms- which noone else asked OR took note of when I'd told them!- he tested.the extension of my arms,looked in my eyes...danced the hokie pokie...LOL. I'm sure if he had I woulda tried to dance it with him! Finally a REAL Dr. like My Peditrician whom I saw until I needed a gyn @ 18. He was also my Dads Ped & my daughters! An old school skilz physician who used all the modern advances to his & his patients.advantage. Kind of Dr I'd planned to be. And the kind I'd suggest you seek out if possible. If not try the Pain Doctors in your area. They've gotten the ' mystery ailment' PTs fobbed off on them over the years & many have become auto immune disorder/syndrome specialists. Good Luck!!!
Hi Mechee, just saw your post about Polymyositis. I was wondering if you could tell me what your symptoms were and if they were relieved at all after your treatment? I recently had an abnormal EMG result (not sure how abnormal just told it was normal) after complaints of painful wrist, arms, shoulders, sunburn feeling on skin, and extreme heavy feeling whenever I lift arms over head. After researching (because no one seems to have an answer) I have stumbled on this diagnosis which fits a lot of symptoms, now wondering if a lot of my lower back issues could be related? I go tomorrow to get my results from my pain management MD, just wondering if you had any advice? Thank you for sharing your experience.
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