Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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im45notcrazy 04/15/2014

Has anyone else visited a physician that has treated them like they have self diagnosed? The latest doctor I have been seeing can't decide if she has or doesn't have my medical records from the diagnosing dermatologist and is treating me like I am making everything up. I am so angry right now. If a doctor asks, 'How are you doing' - you should tell them the truth right? This idiot starts griping at me because I have felt fatigued with muscle pain and some weakness - lots of joint pain and my rash around my eyes has been flared up. She literally acted put out with me because of how I have been feeling. I got so angry at her. I am so sick of this!

nanny1611 04/15/2014

Yes, I have had dismissive doctors along the way. Following are some of the ways they made me feel--
1. It is all in my head--because my blood work almost always comes back very good.
2. I'm exaggerating--even though I had claimed excellent health prior to this.
3. What I'm experiencing is normal, nothing more than the what the average person goes through--but I know it's not.
4. If I would be patient, everything would be better soon--despite the fact that I waited a long time before seeing the doctor.

It can be very discouraging, im45notcrazy. Just know that many of us understand your frustration. But remember, there are many good doctors out there who do listen and take us seriously. It sometimes takes awhile to find the right one(s). Best wishes to you.

pluggingon 04/15/2014

Aside from having bad manners, I'm guessing your doctor is not familiar with your health issues. If she knew what the symptoms of myositis are, she'd also know what treatment you need. Maybe she's not willing to admit that she doesn't know how to help you. I would look for someone else. It's so important for your well being.

autumm 04/16/2014

Hi Iam45. With this disease its important to diagnose it quickly and hit it hard. Does your Rheumatologist test your strength at each visit. What Meds are you on. If I were you I would change my doctor. Time is important and you don't need the stress of a bad mannered doctor. Autumm

amberhere 04/16/2014

Hi im45notcrazy - last year I was diagnosed with DM - ONLY via my Rheumy - my doctor originally was convinced it was carpal tunnel in both hands even though they were swollen with a rash!! He wanted me to have a steroid injection - thank goodness in the meantime I saw another doctor who wasn't convinced and referred me to the hospital when after loads of tests it was confirmed I had DM. I would strongly recommend as well to see another doctor.

deleted_user 04/16/2014

im45, you are just her first real experience with DM and she is not a good fit for you. You do not need her dismissive behavior. Depending on where you are i would head to a medical school hospital, or the best medical dermatologist and broad based rheumatologist you can find.
Not the derm who puts out ads and can make you pretty but the one usually at a medical school hospital who knows the skin is the lense into the body... they can be hard to find.
Where are you located, maybe we can help...
Shawna A dm patient and Nurse.

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