Hi Joyfulcvs, I have DM. I had a very high CPK at the beginning of my DM. My medications got the CPK under control and back to a normal level of 31. I do experience some muscle weakness with normal lab work at times. When I flare, my CPK usually does not go up. I will have elevated liver enzymes during a flare and a couple other scores like aldolace and LDH will rise at flare.

Heart/lung issues can also create muscle weakness with normal labs. I see the cardiologist once every six months.

I see a number of specialists as needed with DM. Nephrologist for kidneys, gastroenterologist for liver & gastric, Neurologist for DM brain related issues, endocrine doctor, eye doctor, cardiologist, pulmonologist (lung), rheumy and internal med. DM is not just a see the rheumy illness. A good rheumy should refer you as needed to the other specialist too.

I hope this helps. Best Wishes.

Hi Joyfulcvs, I was diagnosed with DM purely by physical rash. All of my biopsies (skin, muscle) and blood work was negative but the specialists at stanford diagnosed me by my shawl rash (even though the rash it self had gone and I was only left with discoloration) and red, swollen cuticles. That was on May 28th. Since then, I have started Cellcept, stopped it due to stomach issues and started Myfortic (same drug only coated). Now my CK levels are rising (doubled in a month) but are still in "normal" range and I have LOTS of muscle soreness and fatigue and what feels like weakness to me. I also have severe urticaria, a rash on my hairline and scalp itch. Hard to find doctors that know anything about DM let alone everything that goes with it. Good luck to you in your treatment!

Hello trpt1 and MadmommaG. Thank you for your replies. It is nice to have people to discuss these things with when it feels like no one around you knows what you are going through. I am hopeful that the new rheumatologist will be able to do more for me than tell me to stay out of the sun and hand me a post-it note with DM written out on it and tell me to look it up.

Hi Joy...I was diagnosed with a bad scalp rash and gottrons pappules by a dermi and followed up with a muscle biopsy to confirm the DM. My blood tests have always been in the normal range although I had great pain and muscle atrophy, weight loss, shawl sign, holster rash, etc. The doctors would not give me meds as they said the purpose of the meds was to get the blood tests to a normal level. My Rhumy is associated with the Mayo Clinic so I assume he know what he is doing. I try to find different over the counter solutions to treat the symptoms. Been this way for four years now. Hugs!

Lucky, you have all the symptoms, and no the drugs are not to get the labs in good order, they are to keep you living a significant life with minimal disability.. .Not all rheymy's are alike and not all will tackle DM. Time to get more help. I am sorry that you are suffering and they are not doing anything...
Have you done any reading at TMA, myositis.org??
Best to you, Shawna