For a couple of years I had been trying to tell my rheumy my legs were getting weaker. When I would do pt I always had trouble walking afterwards because my legs were so weak. I only did pt on and off. My rheumy seemed to be dismissive w/me when I would go and make my commeents. He did his usual strength tests and blood work and went so much by the cpk levels. It took a long time for my cpk levels to get into range. Last year my daughter and I took a trip to Ireland. While there I fell and broke my ankle in 2 places, although I didn't know it at the time. One minute I was standing and the next I was down. Have no idea as to why I fell. There was a nurses strike going on at the time so I didn't push to go for treatment because I knew it would put a crimp in her schedule. I really wasn't that uncomfortable but my ankle & foot got quite ugly. I put it up at night and was off it quite a bit during the day as we did a lot of car traveling. Then in Sept I took another fall and really got messed up. Thought I rebroke my ankle but didn't. Had quite a bit of pain though. When we got home I started pt again and had a bad experience at one visit where I nearly fell because my legs gave out. Luckily my arms were strong enough to hold me up while the pt shoved a chair under me. The pt was upset and said he would like me to have another emg to see what he was dealing with. Went to the rheumy and explained what happened and what the pt said. The rheumy bristled and said there was a procedure to follow. All sorts of xrays, blood work and the emg followed. That's when I got referred to Northwestern and the rest is history. My legs just kept getting weaker. The thighs and calves would feel like they were going to give out and so many times I felt I was going to fall. It's hard to describe the feeling I would get in those muscles. All I can say is that you need to question your dr and follow your gut feeling, which is what I did. That's why I sent the email to the dr who did the recent emg. I am just not comfortable that I have the right diagnosis. I wanted to know if he felt from his findings that this diagnosis could be accurate. No dr is going to say another dr is wrong. He just kept saying if it was a family member of his he would strongly recommend Washington U. That's why it's so important to have a dr who has a lot of experience treating myositis diseases. Even with the present diagnosis, there are 16 different muscular dystrophy diseases out there. I want to enjoy life and stop living it according to dr visits.
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