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.
I was diagnosed with DM in 2009. For the last year or two I haven't had any muscle pain and the only rash I've had is a little bit on the face. I'm still taking methotrexate and hydroxycholoroquine.
But I also have a strange symptom that we haven't been able to diagnose. The rheumatologist doesn't think it is DM. My legs will suddenly give out underneath me, losing all muscle strength, and I end up on the floor. Sometimes I can get right back up. Other times my legs are too weak for me to even move, and so I stay on the floor for 15 minutes or more. Up to an hour. Occasionally my arms are affected too. Does anybody else have this symptom yet have good muscle strength most of the time? I am exercising an hour a day ... my muscle strength is very good right now. The falling does not occur in relation to exercise. Some days I don't fall at all, other days, I may fall more than once.
This symptom did start at least a year before I began having other symptoms of DM. So I really don't think it is related, but until I know what it is, that is still a possibility.
But I also have a strange symptom that we haven't been able to diagnose. The rheumatologist doesn't think it is DM. My legs will suddenly give out underneath me, losing all muscle strength, and I end up on the floor. Sometimes I can get right back up. Other times my legs are too weak for me to even move, and so I stay on the floor for 15 minutes or more. Up to an hour. Occasionally my arms are affected too. Does anybody else have this symptom yet have good muscle strength most of the time? I am exercising an hour a day ... my muscle strength is very good right now. The falling does not occur in relation to exercise. Some days I don't fall at all, other days, I may fall more than once.
This symptom did start at least a year before I began having other symptoms of DM. So I really don't think it is related, but until I know what it is, that is still a possibility.
Ambrosia6
Thanks trpt1 - will ask the doc about that too. next appointment is in mid september.
Ambrosia6
I just went about six weeks between falls. I've never gone that long that I can remember. I had started to wonder if maybe the problem had gone away. So, it was disappointing when I fell yesterday afternoon. Oh well.
brendacaytonwhite
Have you seen the doctor recently about your legs? I started tapering my Prednisone this week by 1 mg and I am feeling it already. I am shaking like a person with Parkinson disease. I am using my walker continuously in the houses and when I try to walk down the hallway without it, I hold onto the wall and make sure that it is close by. It is mainly my left leg that is causing me the problem and it was the left leg in the beginning that had the weakest muscle which caused my doctor to take the biospy from my left thigh. I believe that I need another biospy but don't want it as a outpatient, but inpatient is so expensive and I have a percentage I will be responsible for. Everything regarding this illness has a dollar amount attached to it.
autumm
Brenda. You have posted that your doctor did not want you to taper the Pred. Do contact your doctor about this as you really probably still need the Pred. Autumm
Ambrosia6
I saw the rheumatologist last week. She was impressed with my muscle strength. When I flex my arm, you can see it. I've been working out! She still doesn't think DM is causing the falls, and I really don' tthink so either at this point. I haven't seen the neuro lately. Next appt is in September.
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