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New member
Nov 21, 2007
Hi, new to the forum. I just wanted to throw some symptoms out there that I have been experiencing to see if anyone else had similar ones. First off I've been expiriencing the problems since recovering from hodgkin's disease when I was 20 years old. Overall it has been a total wasting of upper body muscle. I've basically been losing 5 pounds of muscle a year for the last 6 years. I originally attributed it to being unable to lift weights, after being a physical fitness nut for most my life. I originally had to stop lifting because of nerve damage to my right shoulder following a botched surgical procedure for removal of a cancerous tumor. Since then I've had muscle atrophy along with gradual weakness in my upper body, along with loss of muscle tone. It since has extended to my entire body. I also have massive stiffness in shoulders, hips, and neck. I feel very rigid and unable to stand up straight, it literally feels like my arms and shoulders are to heavy to hold up. My torso and trunk of my body feels very constricted with a inability to rotate trunk. I've also had muscle twitching throughout body but specifically in eyelids, upper back, shoulders, and upper arms. I also have tingling in arms and feet when I try to stand up straight. The most recent symptom is a sudden loss of muscle in my hip area and butt, along with a inability to raise arms for extend periods of time to shave, brush teeth, etc. Anybody else have any of these symptoms?
definitely sounds like one of the myopathies which are commonly caused from cancer. 30% of polymyositis patient's have it from cancer. Have you discussed these symptoms with your doc and a neuromuscular expert? That is what I would suggest. Good luck.
First off thanks, I'll have to research that.

I've talked to my oncologist about the symptoms. For years I've attributed it to having a paralyzed levator scapula and dys. trapesious muscle which causes my right shoulder to sag really bad. I've been through PT twice for that with little permanent success. Therefore my discussions with the oncologist have always been about that and not other symptoms. To be honest I'm fearful of explaining symptoms to doctors after going through cancer. I do have a appointment in december with my doctor, I just don't want to sound like a hypochondriac.....but it is becoming more and more realistic that it may be a real issue. Also another new symtom has been my ankles turning inward(towards eachother) along with a inability to place the right hip straight ahead when I walk.....I feel like my hip rotates out to the right in order to walk.....its especially noticable when I walk up steps. Thanks for the help.
Chris, I certainly understand your fear of having any kind of symptoms after suffering from Hodgkins. And let me tell you, many of us have felt like the docs might think we are imagining our symptoms. But, hip, shoulder, neck and ankle weakness are classic for polymyositis, it often strikes people with cancer and it can get worse without treatment. That's the good news, it can be treated! I feel bad you have already been down one rough road and now have something else to deal with. We have some symptoms in common, even the sagging shoulder which I was left with after a dirt bike accident. I, too, thought it might be the answer to some of my problems, bu muscle biopsy has shown polymyositis. I know that twitching is not a symptom, but I have had extensive twitching for over a year now. I have no muscle tone anywhere in my body and have dropped a pant size even though I gained 10 pounds on Prednisone. But, I'm still here and still have function of my body. Please get in touch with a neuromuscular specialist. Your other docs probably won't know much about what's happening to you.
You need to schedule an appt to see a neuromuscular specalist. They specalize in muscular diseases.

You will likely need an EMG and Biopsy. Schedule your appt now. Don't go to a local neruo, you should go straight to a large acedemic center.

good luck
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