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.

317 Members

2,891 Posts

0 Online

hanksmom76 04/30/2013

How long did it take for your actual diagnosis? I have been having a battery of tests done for 2 YEARS and finally meet with a surgeon tomorrow to consult on a muscle biopsy. I have a strong family history of dermatomyositis. My primary doc said it is likely I have it.
Don't get me wrong - I (Like you) DON'T WANT to be sick but I want to know what is going on.
I have the facial rash
positive ANA
Gastropariesis & I will also vomit stool (nasty I know)
Esophagitis
Stomach Polyps
Bilateral Burning/aching Thigh pain with knee pain
Also random fevers that last weeks
random elevated white blood cell counts
random lipase elevation (I don't drink alcohol)
Gastritis
LOTS of trouble swallowing
Depression/Anxiety
Fatigue

I literally could go on and on -about issues that have actually been dx but they do not know the cause -- but the one thing they haven't seen is an abnormal muscle inflammation marker. I am waiting (again) for the 72 hour aldolase test and s/b back by Thursday. I have had the test where they stick the needles in my muscles and also shock the muscles and I was told that was also normal. I was tested for Lupus but the c3/c4 levels were normal. My primary doc literally tells me he doesn't have any idea what is wrong with me but in the next sentence he will say it is likely I have DM.

I went into ER (again) last night for burning aching thighs and they look at me like I am just there for the drugs. Really? I want to spend 6 hours so I can get a shot of morphine? I don't think so! In fact, I had to ask him to check my blood - I seriously don't know what he would have done had I not asked for the enzymes to be checked.

I'm sorry to sound so angry - I am just so frustrated. I applied for social security disability and the attorney literally dropped the ball and it was denied and there wasn't ANYTHING mentioned about the above issues.

Anybody go through a difficult diagnosis? I have been poked and prodded so many times in the past 2 years I just want to know something.

autumm 04/30/2013

Hi there. I am sorry to read your post. I have PM but am sure people will come on with DM to help advise and share. It took two years for my diagnosis. Bloods were always normal and then my fingers swelled up like sausages, I had pain and stiffness, great fatigue. I had raised CPR, ESR and CK levels. It is a difficult disease to diagnose but having the autoantibodies for Myositis did it for me. I wish you well and understand your frustration. Seven months ago I felt the same but now am much better. Autumm

hanksmom76 04/30/2013

Hi Autumn
Thank you for your quick reply. It feels a bit better just to know I am not alone out here.

lexisgirl 04/30/2013

I have PM as well. It took about 4 years for me to figure out the cause of my weakness. I saw countless doctors before I found someone that keyed in that something was wrong alright and sent me to a muscle specialist (Neurologist). Once there, I was diagnosed within 3 months.

trpt1 04/30/2013

Welcome Hanksmom76. I am sorry that you are going through so many health issues at this time.

I am not a doctor. Here is the usual routine that most of us go through - If you do have myositis, then the muscle biopsy will give your doctors important information. Blood tests for autoantibodies will also play a role in the diagnosis along with EMG testing from the neurologist.

You may want to look at the website Sclero.org. Dermatomyositis is known for having overlapping conditions. I have dermatomyositis and crest scleroderma. I think the scleroderma website would be very helpful.

The myositis association website is also a helpful place. You can talk to others with myositis. There are helpful articles about autoantibodies and medications used for the disease. I find it to be an important resource.

Doctors have a difficult time diagnosing autoimmune diseases. There are so many similarities between autoimmune diseases. I think time and the medical tests will eventually bring out more evidence to point your team in the right direction.

Be patient and do your best to relax during the waiting period for results. It is very difficult to not have a conclusive diagnosis yet. We are here to talk with you and support you. Keep us posted.

deleted_user 04/30/2013

Hi hanksmom,
Just a note that I'm two years into it too, just like you. Emgs, all of that. Here's to patience and good health!
Tricia :)

nanny1611 04/30/2013

Hi, hanksmom76, and welcome to this forum of helpful and informative people. I got sick the beginning of 2006, but it took me 2-1/2 years, plus several doctors and lots of tests, before a neuro finally diagnosed me with PM in the Fall of 2008. At that point, I was barely able to care for myself. It was very frustrating. But once the neuro diagnosed and treated me, I started to regain strength. Then in 2010 I got rashes that wouldn't go away. So I saw a derma who did a couple skin biopsies and diagnosed me in 2011 with overlapping DM and Lupus. Despite a setback or two along the way, I live a near-normal life today and am very grateful to be alive. Best wishes to you for a diagnosis soon.

deleted_user 04/30/2013

It took me 5 or 6 ;years to get the skin dignosed as DM with 3 biopsies and then i was fine for a few years. two years ago the muscle weakness and fatigue hit like a ton of bricks and it still took me with a diagnosis a few weeks to admit it and go in and ask for some more testing and treatment!!! It is a really hard disease to pin down. I too have gone to ER and had then ask me about it. They are trained to help the common, not the spectacularly uncommon diseases like ours... I find i get more help if i can wait for my Rheumatologist or email my specialists. I wait longer but the soulution is better. I do use oxygen at home and that has helped my thigh pains quite a bit.
Sending you strength and patience.
Shawna

deleted_user 04/30/2013

i'm so sorry you are having to go through so much. i guess i'm lucky bc i was diagnosed within a month back in '04, but then i had an incredibly rude introduction to the world of dm. it took me about a year in '12 to get the diagnosis that i had lupus overlapping causing many more probs

the main issue is that auto immune diseases are incredibly similar when you just look at the symptoms and there's no real definitive test. these meds are so harsh they get reluctant to put you on something in case it's something else going on.

have you had a skin biopsy yet? that's where my path to diagnosis started

Join the Conversation