So sorry for today's disappointing visit with the neurologist. Many of us here understand your frustration of being told that it's "nothing" when you know that it's "something." Feel free to vent here anytime, because we understand and care. It was during the time when I still had no answers, despite dozens of tests and several doctors, that I started doing my own research. Even now, after getting answers, I still search for more answers. You might want to take a short break and gather your thoughts, then try to look for your own answers, until you feel up to the next round of doctor visits. Here is a weblink to a Facebook page that I've been reading for a few weeks. She speaks much about fibro, so it might be of interest to you. I've already started changing my diet again, and I'm thinking of purchasing her book. Much of what she says makes good sense, especially since I know that I have digestive issues. Best wishes to you for finding something to help you. Keep us informed.
https://www.facebook.com/Autoimmunethecauseandthecure

I am no doctor nor expert but I believe others here with DM have sometimes mentioned they had little to no muscle issues at the start. Sometimes DM doesn't involve the muscles. I've also read here that many people are diagnosed by a Dermatologist who then refers them to a Rheumy or Neuro.

I know that frustration of bad doctor visits. I saw several doctors and a few years trying to figure out what was wrong with me. I'm still not 100% sure they got it right but the medications have helped. Not 100% but better.

Stick with it, keep track, keep asking questions, and keep pushing for an answer.

I had the same issues Melwally, I am a workout freak so I was really healthy when the DM hit me. I had one 'Dr' laugh me out of her office. My old Dr. yelled at me because he said he has patients that can't even get up off the table and I still had strength. DM doesn't always involve the muscles - but it's still DM. I finally found a Dr. I think I can deal with. Even she said that DM doesn't always involve the muscles. Unfortunately, I now have muscle involvement - it sucks. I completely understand how you are feeling. When I joined the group I chose 'im45notcrazy' as my name for a reason!!

Hi Melwally. Here is the truth - if you do have DM then it is not going away. Eventually, a doctor will have more comfirmation and not be able to deny all the symptoms.

I would suggest seeing a rheumatologist and run some autoantibody blood tests. Check for myositis autoantibodies, Scleroderma, and Lupus. The autoantibodies are the main thing for finding the direction your disease will take. Doctors can not argue over autoantibody results because they are facts. Autoantibody testing will give some answers.

You will eventually get the right answers on your health. This is a journey. Keep us posted.

Melwally, this site www.privatemdlabs.com is a good place to order some blood work. You can order autoantibody testing and find out for yourself if you have anything that is autoimmune.

Thanks for all the input.. Trpt1, I have had several auto-antibody tests ran. my cpk is elevated but only slightly everything else so far negative. I have not had the mi-2 yet. There may be other things that I haven't had ran that I don't realize, but as far as sed rate, ana, anti-jo1 all negative. The dermatologist that diagnosed me said he has seen cases like mine. I have seen a Rheumatologist that was very rude, said no way it was DM because my cpk wasn't high enough. She was young and rude, said I had definite dermatological issues she couldn't explain, but this is not DM. I went back to the dermatologist, who is a very well respected, older dr. in my community and he said my cpk shouldn't be elevated at all and all of my symptoms fit. He said he was so convinced that he wasn't even sending me for a muscle biopsy, but he did say I needed a rheumatologist to make sure I didn't have some overlapping MCTD or something along with the DM. My GP who appears to be totally annoyed with me because I have been persistent about finding the underlying cause of all my health issues said I have chronic musculoskeletal pain, but if the Derm says DM ok. It has literally been a nightmare finding someone other than this dermatologist that says yes, it's DM this is what were going to do.
I have been doing countless hours of research and you know your body better than anyone. I have been having health issues for at least a couple of years. Every time I type in my symptoms, DM comes up. I don't know why my labs aren't crazy, but I have read countless medical journals this weekend and stories of others who's labs didn't either. My hands look exactly like pics of someone with DM. Although I appear to have muscle strength to the doctors, it has drastically diminished, they just don't know what I was like before. My muscle pain is what's bothering me the most. It was better at first on the prednisone, but seems to be getting worse again and spreading. My calves and hips have really been hurting and achey. They tell me I should still be working out, but the times I have tried, omg I can't move for a few days.
Given my labs, and the fact that I don't have one huge thing that jumps out I think that is what's making my diagnosis so hard. My hands look terrible, but my other rashes come and go. My eyes have begun to have dark circles and swelling lately though. I am determined to find someone to listen. I know this is not fibromyalgia. I just have too many other symptoms that don't fit.

Melwally, I would not disregard the fibromyalgia, because DM can have many overlaps.

DM needs to have a CPK that is above normal. There are people who begin with skin only and a mildly elevated CPK. Remember that I said that if you do have DM then it is not going away. You might be one of those who have a slow on-set of disease.

Eventually an ANA titer with autoantibodies will show up. My Scleroderma autoantibody did not show up until my third year with DM. My pulmonary hypertension showed up my third year with DM. My kidney disease showed up the beginning of my fourth year with DM. You might say it is like a disease flower that blossoms over time. Be patient. Eventually, your tests will reveal more of what is true for you.

We all understand your frustrations. This DM and any autoimmune disease can be a waiting and patience issue. Keep us posted.