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AirForceMom2 07-27-2006 03:36 PM

Is anyone familiar with Polymyositis?
 
Hi. I was diagnosed with Fibro about 8 months ago however I have had symptoms since my late twenties. I am 45 years old now. I saw many docs and speciatists with no diagnosis until a new family doctor figured it out in about 30 minutes of talking and a ten minute physical exam. My Dad was recently diagnosed with Polymyositis. I have read a little bit about it online and sounds like a lot of the same symptoms as Fibro but can become more serious if gone untreated. If anyone is knows about this disease I would appreciate your comments. Onthe one hand it is kind of scarey to think I could have it although knowing there is treatment that can make you feel better is encouraging. Thank you in advance for any information.

PS....here is a tip....don't go hiking on a steep, wet trail.....took a bad fall last weekend while camping. A 45 year old lady with Fibro falling down is not a good thing. However I did recover in only 4 days which is like a dream. It usually isn't that easy. God is good. : )

cmsaint 07-27-2006 05:47 PM

Re: Is anyone familiar with Polymyositis?
 
My grandma died of it a few years after she was diagnosed. She didn't get it treated in time, she as in her 60s. We were told as the family not to be concerned because it isn't hereditary.

elmhar 07-27-2006 08:42 PM

Re: Is anyone familiar with Polymyositis?
 
Hi AirForceMom,

You probably know from your reading that PM is an autoimmune disease. There are very specific tests, blood & muscle biopsies, to confirm the dx. Quite different from fibro in that respect. The dx of fibro is given after other likely causes are ruled out. At the very least, there should be a few blood tests done to rule out other causes. I am highly suspicious of any new doc who figures out complex things in 30 min.

So, if you are concerned about it, ask your doc for a referral to a rheumie.

Best wishes.

AirForceMom2 07-28-2006 03:58 AM

Re: Is anyone familiar with Polymyositis?
 
Hi elmhar.....my first post was misleading. My doctor that diagnosed me had extensive lab results from rheummy I had seen for a few months prior. He is no longer my doctor because he insisted all my problems were due to smoking (I smoke about 1/2 pack per day) and told me his best friend died of lung cancer at 40 y/o. I felt like he should work at a stop smoking clinic. I have had so many docs over the past 15 yeas or so rule out things and just drop me. I do believe I have fibro. RA & lupus were ruled out and I had no inflamation according to bloodwork. I have RA, lupus and Crohns in my family. It just seems that I have followed in my Dad's footsteps as far as physical problems. My old family doc used to kind of blow me off saying "oh, you're just like your dad, take ibuprofen and see what happens". I probably shouldn't worry but my fibro has gotten so much worse in the last several months with treatment for low thyroid that it honetly does scare me. I loose up to 8 days a month now with pain that keeps me from daily activities. Thank you for your reply. I appreciate all input.

elmhar 07-28-2006 09:22 AM

Re: Is anyone familiar with Polymyositis?
 
Hi AFM2,

Thanks for the clarification. I'm glad you've had the rule-out testing done. So, it is possible your new doc was on the right track.

You say your symptoms have gotten worse w/treatment for low thyroid? Hmmmm, sounds like an endocrine contribution there. There are a couple of possibilities.

Are you following your thyroid test result numbers (getting actual copies of the lab results). And are you confident that the recommended treatment has pushed your free thyroid hormone numbers (free T3 & free T4 ) towards the midpoint of the reference ranges? And did you have thyroid antibody testing done?

Treatment of thyroid issues in fibro is a bit more complex than the simplistic TSH worship most docs have been schooled to engage in ... Inadequate treatment of thryoid problems can make fibro WORSE, esp. if a "teaser" low dose of T4 med is given, just enough to cause feedback to the thryoid to cut back on its own hormone production ... you can end up with net less active thyroid hormone than before.

And then there are adrenal function issues & other hormones (estrogen & testosterone) that interact w/thyroid function.

Best wishes.


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