2010 Review

Well, its' been three years. Actually Jan. 1st will be three years to the day that I came home from the hospital. Sometimes I get frustrated with the limitations I have, but if I sit and think about the progress...there really has been, esp in the last few months. My CPKs were normal for two months (Sept and October). November was a little high, but not too bad really. Lab was drawn this morning, so I'm hoping that will return to show it as normal too.

I ran the vacuum for the first time in three years. I had not had the strength to push it. But, I was able to do so about 2 months ago. you know, I really don't like to vacuum. ha.

I've been able to walk more. A little longer over time. I still get tired, though. It still boggles my mind how I can walk from the bedroom to the living room and feel like I just ran a marathon! Hopefully it will continue to get better.

I still hate the weight gain that came with all the medications! I sure wish I could get rid of some of the excess weight.

Overall, I guess it's been a good year as for Polymyositis, even with the setbacks here and there.

EMG results

I had an EMG today. I didn't think it was necessary, but the new neurologist wanted it done. She is questioning my diagnosis. Doesn't matter, evidently, that I had a biopsy done and it confirmed my diagnosis. I also questioned the need of an EMG b/c I'm on all the medications which has decreased the inflammation, etc. So, there wouldn't be evidence of inflammation. But...I spent an hour being poked with needles and being shocked.

The EMG showed evidence of myopathy. Myopathy is characteristic of Polymyositis. Of course, new neurologist doesn't want me to have PM, so she goes on to say that she thinks it is Steroid myopathy. Sure, that is possible. That doesn't mean I don't have PM. So, she says she wants me to have another biopsy done. I think I have to draw the line a surgery. There is no need for it. I know what my diagnosis is...I'm responding to treatment. Yes, I know I need to get off of the Prednisone and my doctor has been working on that.

I returning to Dr. Lowery. I like having a doctor who listens to me and believes what I say about my symptoms.

Distal muscles

Polymyositis affects your proximal muscles (those closer to your trunk, hips, shoulders, etc). That's been typical for me as well. Though when at my worse I did have some weakness in my hands...I couldn't open things, my handwriting became bad, etc. But, that improved over time as well. Lately, though, I've been having pain in my hands and fingers. By lately I mean several months, but it seems to be getting worse...or it feels worse to me. Making typing harder to do...I keep having to correct things...and, it simply hurts.

I'm kinda tired of the pain. I don't like taking pain medication all the time, yet I don't particularly like being in pain either. If I thought the pain meds were a temporary thing it would be one thing...but this is obviously not a temporary condition.