Hi, I have slight myopathy in my iliopsoas (sp?) muscles, with pain on my right side, though my CPK count is not elevated. I have been tested for metabolic disorders and they have come back negative. When I walk, I have pain in my legs and my hips, though those muscles were negative on the EMG. Does this sound like what people have with myositis? What are people's experience with recovery? The Dr. who did the EMG doubts it is a dystrophy. I just want my life back. For the last 16 months, I have had nothing but health problems, and now this. I used to be healthy and in good shape and just dearly want to get back to that stage, even if I have to have some muscle weakness for the rest of my life.
and I also want to know about the cancer link and the supposed high increase for cancer in the year or so following myositis. I just read about that and will certainly talk to my dr. I'm seeing a neurologist at Johns Hopkins, so I'm going to the best place there is, so I feel like I'm in good care, just very scared.
So your EMG was negative? Did you have nerve conduction studies done as well? How was your diagnosis of myopathy made? I am asking and interested as I have also been suffering from pain in the hips and thighs for about 10 months now. I had an EMG done by the neurologist and he said it was normal. Also had an MRI which showed facet arthrosis and slight subligamentous disc protrusion but he said that wouldn't be causing the pain and extremely tired and worn out feeling in my hips and thighs. He just said to come back if it gets worse. I have not had a CPK test done as the doctor thought it was not necessary but I haven't given up and will keep pestering as I also don't want to continue like this if it can be helped! Would you please elaborate on your symptoms? I haven't been able to do a sit up as hard as I might try! Thanks for your help. Hoppy
No, it was positive for my Iliopsoas (sp?) muscles, where I have small patches of myopathy, but negative for the other muscles in my legs and my arms and shoulders. Yes, I had a nerve conduction and it was fine. I'm surprised he would have an mri but not a cpk test, it's just a blood test. Have you asked about a muscle biopsy? I haven't talked to my dr since my EMG, but I'm guessing that's the next step. However, the dr who did my emg said I could get a biopsy done in muscles that showed nothing on the EMG because it was a fairly crude device and would not pick up low levels of inflammation
I was diagnosed with Myositis by muscle biposy. My shoulders were bothering me more than my legs at the time, so they did a "Open Deep muscle biopsy" on my thigh. And showed "active Inflammatory myopathy" . All my other tests were negative, EMG, NVC, CK levels were never raised. SO you CAN still have a myositis even IF the other tests are negative, proven by muscle biopsy.
My legs now are the worst for me. Having major issues with my hip flexers in particular. Difficult getting up from a chair, climbing stairs, and even getting my leg up to get dressed. But along with this weakness has come ALOT of pain. Which is how my shoulders started out, ALOT of pain, then weakness.
I was put on Prednisone for a time, and unfortuantly it made matters worse for me. I felt weaker, so was weend off them and just have been dealing with it. Ive also found I've lost ALOT of my flexability.
I did have a cancer scare several months after being diagnosed with myostis. There were two "nodules" found in my lungs. Long story short, the one in my right lung had a sudden rapid growth rate. I was sent for a PET scan and that too showed "hypermedobolic uptake" which can indicate cancer. I then had a cancer "staging procedure" taking biopsies of all the lymph nodes in my chest. THen was scheduled for surgery. I had a "wedge resection" of my right upper lobe, and by the Grace of GOd it was begnin! It turned out to be a RARE type of infection that "presented" like cancer. And the fact I was on prednisone increased the growth rapidly. I now have 2 new areas of "nodular thickening" that they are keeping a close eye on, as well as an area of collaps in my left lung that is being watched as well. They are well aware of the potential for a "Cancer link" that can accompany myositis, so as I said they are keeping their eyes on things. Scarey...for sure, but feel blessed that it WASNT cancer!
How are you all coping ? Have you had to make any "life style changes"? I'm in the process of filing for social security, and have been on disibility from work since June of last year. My job was VERY physical, which I enjoyed. I always have been a "physical" sort of person. I've had to sell my horse because I could no longer ride due to the intence pain in my hips. Was an "On the go" person, and those days are gone. Just wondering "where" you all are in your myositis.