On 7/11 I went to my neuromuscular clinic to get the results of my muscle biopsy. The new resident came in and did a full exam first, without filling me in on the results. I did have some anxiety and tried to make small talk with him, but he held his head high with one of those...I am a neurologist (almost!) and I am great....attitudes. Then the doc came in and told me the biopsy showed mild myopathy. She talked about my history and my exam some, pulled her chair up to my legs and said....I really don't think you have polymyositis because those patient's are much worse, they have trouble walking and many need assistive devices. She said I just have a mild myopathy for some unknown reason, gave me a script for prednisone, told me I had to take it no matter what for 4-6 months and that was that.
I received my biopsy report in the mail a couple of days ago. Of course, I was floored when I read that it was positive for polymyositis. She failed to mention that the biopsy diagnosed this, but just chose to override it. I would have liked to have known and ask questions. I took the biopsy to my rheumatologist appt. who said it definitely was positive for poly and that she treats a handful of patient's with it and none of them are using assistive devices.
I know I am lucky to be walking and talking, but validation from the docs of how really, really bad I feel would be nice. I can't sit up straight, I have some atrophy, my muscles burn in relentless pain, I twitch all over and am extremely weak, not to mention the total exhaustion that comes with this.
GET ALL OF YOUR RECORDS. So many people on this forum get their reports and the docs have left something out of what they told us. I know they have to use their expertise along with the tests, but when a chunk of muscle is ripped out of your body and the staining and histochemical testing says it is positive for something, they should tell the patient! I never would have known if I didn't get a copy in the mail. ~Leslie
I received my biopsy report in the mail a couple of days ago. Of course, I was floored when I read that it was positive for polymyositis. She failed to mention that the biopsy diagnosed this, but just chose to override it. I would have liked to have known and ask questions. I took the biopsy to my rheumatologist appt. who said it definitely was positive for poly and that she treats a handful of patient's with it and none of them are using assistive devices.
I know I am lucky to be walking and talking, but validation from the docs of how really, really bad I feel would be nice. I can't sit up straight, I have some atrophy, my muscles burn in relentless pain, I twitch all over and am extremely weak, not to mention the total exhaustion that comes with this.
GET ALL OF YOUR RECORDS. So many people on this forum get their reports and the docs have left something out of what they told us. I know they have to use their expertise along with the tests, but when a chunk of muscle is ripped out of your body and the staining and histochemical testing says it is positive for something, they should tell the patient! I never would have known if I didn't get a copy in the mail. ~Leslie
