The muscle biopsy will not show the correct results as you are on a. High dose of steriods. A MRI scan of your lower limbs would show inflammation. DM/PM does normally respond quite quickly to the steriods, In my case a matter of days, Fibro does not respond to steriods at all. Lab work for me showed nothing for two years, I was tired and unwell but nothing showed up in any tests. Suddenly all my labs went wild, high everything and now I am about to stop all my steriods fourteen months down the line. Autumm

Autumn,
Thanks for your response. I am on my 4th week of the prednisone and I actually got up today and felt better than I have in a long time. I wouldn't say good, but def a little better. So did they give you a diagnoses of DM initially even though your labs weren't high? As I stated before waiting on adolase results but neg ana and sed rate. cpk only 213. Are there any other tests you know of that I should request?In my gut I just do not feel that it is fibro. I have researched this DM and I have many of the symptoms just don't have high labs unless there are labs that I have just not had done. I don't have horrifying skin issues but I have had rashes come and go for the last couple of years. Gottron's Papules and my hands get very red at times, dark circles under my eyes, cherry angiomas that turn from red to purple of brown and scaly, hand tremors. After my muscle pain started getting worse I was also diagnosed with copd and I have never smoked in my life was a personal trainer. My dermatologist diagnosed me and he said he has seen a few cases like this, but the rheumatologist was very rude about it all to me yesterday. She said because of my labs no way was it DM. I asked her to explain my lung condition, tremors and skin issues and she said she couldn't. I also have big lumps near the joints in my elbows that have been there for almost 1yr. The derm said it was a build up of collagen, the rheumy just ignored it. Anymore input would be greatly appreciated. I am at my wits end with my health. Thanks again.

Hi. I have PM not DM but the process of diagnosis is the same. I am concerned by your Rheumatologist dismissing your lung issues. Has she tested you for myositis specific antibodies. I have JO-1 which means I could develop lung issues and I am being seen by a lung specialist to keep a eye on me. I am also being treated with Imuran to keep any inflammation in my lungs suppressed, so far, so good. You need a second opinion from a Rheumatologist who is not so rude about other doctors or so dismissive of her patient. It is really important you get the right diagnosis and treatment. Please let us know how you get on. Sometimes you are the best advocate for yourself as only you know things are not right. Autumm

Hi Melwally. Having conflicting opinions among doctors is not a good thing.

A neurologist is the doctor who does the main DM testing. The neurologist confirmation of DM is often an EMG muscle test, a muscle biopsy, full blood panel and autoantibody testing.

I agree with Autumn that If you do not buy the diagnosis, then a second opinion at a different rheumatologist might be helpful for peace of mind.

You might want to visit The Myositis Association website at www.myositis.org and read up about DM to see if your symptoms match up.

If you are still unsure after reading about myositis, then Scleroderma has many symptoms similar to DM. I have DM with overlapping Scleroderma. Check out the site Sclero.org and see if anything looks familiar. Myositis and Scleroderma can have lung issues.

Try to stay positive and patient. You are at the beginning of this journey. Read articles and look at skin pictures. A doctor with good communication skills is important. You need the confidence that your blood work matches the diagnosis. Keep in mind that DM does not just disappear. A doctor would not be able to deny muscle flares, elevated enzymes, symmetrical weakness, high cholesterol, etc..

Keep us posted! I hope this helps.

Meiwally
I have PM
I also had big lumps near the joints in my elbows. My doctor called them nodules.
This nodules disappear after i took Methotrexate and Prednisone

Thanks for all of your responses. It is nice to know you are not alone in this journey. I actually just saw my Gp today because when I was at the Rheumatologist my pulse was 145 and Bp was high. Neither ever have been. The Rheumy kept saying she didn't feel comfortable with my pulse so when I left I needed to call my Gp because she said she wasn't a heart doctor. That response made me uncomfortable. I was sitting in her office at a major university hospital in my state with my pulse that high and she told me to call my Gp which is in the town I live in about 70 miles from her office. Any my Gp said he has known the Dermatologist that diagnosed me for years and he knew what he was doing so I should go with him. I do feel better today than I have felt in months. I am currently on 40mg prednisone. I have an appointment with my neurologist the first week in Jan. I also have an appointment with the nurse practitioner that I used to see next wed. She never could figure out what was wrong with me, but I have known her all my life and she is very opened to any tests, etc.. She will also get me into one of the Rheumys in her clinic. As far as my lungs go, no one has really taken the issue seriously. I was in the hospital in aug. because I literally would get out of breath walking to the bathroom. They said well maybe you have asthma now on top of the copd. I followed up with the pulmonologist after I was out and he said my copd was mild and no big deal said "just use your inhaler if you need to". I have had a CT and 3 or 4 different x-rays they all say attelactasis on lower lobes, one says mild copd. I never feel like I can get a full deep breath and I tell them that but they blow me off. My oxygen is always 100 so they say I'm fine. When I was in the hospital one of my nurses told me to be persistent that he thought because I used to be a trainer and was in such good physical condition that I had conditioned my lungs to compensate because he had seen a marathon runner have 100 oxygen and had a collapsed lung. Anyway as you can see having a hard time finding good doc's. They always tell me major anxiety disorder blah blah blah! And yes I have researched DM and I do have many of the symptoms my labs just are either negative or not crazy out of control. sorry this is so long. I guess I needed to get all that off my chest. Lol! Thank & blessings to all the responses..

Hello: I just joined this group. I was diagnosed with DM about 4 months ago. I only had skin symptoms, no muscle weakness. Muscle enzymes normal. My dermatologist and rheumatologist agreed on the diagnosis eventually (at fist they thought it was SLE, "lupus". They called my form of DM Dermatomyositis Sine Myositis (i.e. "without myositis"), also known as Amyopathic Dermatomyositis. Just a few days ago, I started getting some muscle cramping in my bicep and numbness/tingling in the thumb of the same hand. So I may be developing myositis, and I am seeing my dermatologist next week. Anyway, my point is that there is a spectrum of signs and symptoms in DM - sometimes muscles are not affected and muscle enzymes are normal. Your Dermatologist may be on the right track, but it never hurts to get other opinions. From my reading, Gottron's papules are very characteristic of DM. I wish you well on your journey.

@c2442I
Welcome to this group of nice people. Sorry that you qualify for this forum, but glad you found us. Best wishes to you.

Hello,
And welcome to the group. I have had DM since Aug. 2012, still show neg. ANA, neg. sed rate, and always normal CK.

I had muscle weakness, dark circles, etc. Muscle biopsy inconclusive, however blood test showed positive for Mi-2 autoantibody, a myositis antibody.

I have a great deal of Gerd (reflux) that causes me to be short of breath, even with a good pulse oximetry result. Maybe you have reflux too. Btw, my reflux is silent, I never have heartburn.

I too was told I had asthma for 20 years. Now I don't have it per my pulmonologist.

I also had a fast heart rate at times, with scary palpitations. My neurologist had my start CO Q 10 for prevention of migraines, which actually totally got rid of the heart rate abnormalities. Of course your dr. can determine if this is right for you. That said, my rheum. says we are "calling my diagnosis DM for now", and that I have overlap diseases, we are waiting for something to show up in my blood. Or overt physical symptoms. Keep us posted!

I am so glad I found this group. The more posts I read on here, the more I realize no two people have all the same symptoms or test positive for the same things. After the diagnoses from my Derm and researching DM I have felt in my gut this is definitely what I have. At this point I think I just need to find another Rheumatologist. I wont be going back to the one I saw yesterday. I finally started responding to the prednisone today. Don't feel well, but don't quite feel like I was run over by a truck today. My knees have started getting really red and are developing a rash on them and my hands look worse tonight. I have never had the shawl rash or a real predominant rash. Mine seem to just get very red and come and go never lasting long periods at a time. I am learning so much from all of you. It is making me determined to be more assertive with the doctors and fight for my health. At this point I don't even have a Rheumatologist and my Dermatologist is going to be gone until Feb. My Gp said he would keep me on 40mg of prednisone for the next month. I was on 60mg for 2wks 40mg for 1 wk and I'm starting the 4th week on 40. He said 4 more weeks of 40 then he would taper me down. I'm just curious as to the doses some of you have been on and the length of time they kept you on them. I will be seeing the nurse practitioner I used to see in rheumatology this coming week. Hopefully she can get me into one of the rheumatologist. They wouldn't see me before because I showed no arthritis in my hands. My quest to find good health care providers has been a nightmare to say the least. Anyway just curious about the prednisone. My Gp said he hasn't seen a case of DM for 30yrs and doesn't know much about it so until I find someone who does I want to make sure he is doing the right thing. Thanks everyone, it's so nice to have support...

Hi Melwally. I started on 60mgs a day and started tapering that down after four weeks. After four weeks he started me on Imuran and continued the taper by various ammounts until I reached 10mgs. Then I tapered by 1mg a month. Today is the first time in fourteen months I have not taken prednisone as I have now finished the taper and we will see how it goes just with the Imuran. Before diagnosis I was a bit breathless but that comes with the inflammation and should go with the prednisone. When you see your nurse practitioner or your new Rheumatologist please ask them to test for myositis specific auto antibodies. The results matter for your treatment. For example my Rheumatologist would not give me MTX because I was positive for the JO-1 and those of us with these auto antibodies do need an extra drug to the prednisone. Am so glad you are starting to feel better but make sure they are on top of what exactly is going on with your lungs. Best wishes. Autumm

Autumn,
Thanks for the info. You have no idea how helpful it is. Finding this group and people like you has been a Godsend. I think the hardest thing for me is learning my new limits. I was really angry about all of this at first but I'm trying to come to a place of acceptance and knowing my limits. I was getting to a place where all I could do was make it to work and bed. When I felt a better yesterday I kind of pushed myself. It also doesn't help when you have doctors that blow you off or tell you it's just anxiety. Thank God for this Dermatologist. I have been struggling for at least 2yrs with all these weird symptoms. I am kind of over my pity party and coming to a place of realizing it just is what it is. It helps so much to have people that understand. I will mention all of this to my NP. She said she doesn't much about DM but I have known her all my life and she has always been open to my suggestions. Hopefully she will get me into the rheumatologist there. I heard she is very good. Thanks so much Autumn..

Hi Melwally. I was so fortunate to have a Rheumatologist at the top of the tree at London's oldest teaching hospital. They don't come any better qualified but he is a unique and caring young man. He made his diagnosis from clinical experience and has been just the best to me. Because he has been so good I feel almost driven to put something back, I can only do that by explaining g how he has looked after me. Don't give up on your 'gut feeling' about this disease. Testing for those auto anti bodies is crucial to the long term management of this disease, this is the most important discussion he had with me. Autumm

Forgot to add. I did have biopsies of my skin. path tested for dm and lupus. biopsy was + for dm. I have very few episodes of muscle weakness. Have not had any episodes since remission. I also have Fibromyalgia. I have had fibro for 10+ years. So many tests I can not name them all. Expensive too.

I have been seeing a Rheumatologist for Dermatomyositis since April this year. She started me on Prednisone aggressively. Now I have been weaned down to 10 mg daily. I am now in remission. I have had all the CT scans no malignancies. My labs were crazy-now normal. She is seeing me every 3 months to eval my lab work. hopefully we can maintain. I hate taking the prednisone. Moon face, large andyuckbut, better than the alternative. My Dr. was very knowledgable in Dermatomyositis. She brought in another Dr to see me also. b/c it is a rare disorder. It takes time so try to be patient. I am so glad I found this support group just reading the post have helped me tremendously. This is my first reply. I wish you well. Praying for peace and comfort. Forgot to add. I did have biopsies of my skin. path tested for dm and lupus. biopsy was + for dm. I have very few episodes of muscle weakness. Have not had any episodes since remission. I also have Fibromyalgia. I have had fibro for 10+ years. So many blood tests I can not name them all. Expensive too.