I was sure you were just worried. You are a good person for caring. You are considered one of us, Lou, and we will always be here for you. And, you're right, we need to put just a little, (not too much!) more trust in the docs. It's so hard when they don't acknowledge symptoms. Which brings me to a short conversation I had with my neuro Tues.
Sat. I painted a design on my 9-year-old's bedroom wall. I knew I had to work until it was finished because I would have muscle problems. I had a few touch ups on Sun. By Sun. afternoon and all of Mon. I had excruciating muscle cramps in my right arm and my right bicep/tricep looked like a bag of microwave popcorn. There were no random twitches, it was nonstop. My mother started to cry because, frankly, I think she may have not even realized what I meant by twitching. The cramping and twitching was also in my calves in ankles from getting up and down for paints. I decided what I was going to say to the doc before I called her and this time I did not let her interrupt me and make me feel helpless. I told her about the sx and that I was confused on whether she thought I was imaging sx, making them up, not having them at all, because she keeps saying she doesn't understand them. For the first time she seemed so understanding and nice. She explained the "science" and the "symptoms" not coinciding and she said she absolutely knows I am having them. She explained it is her job to keep an eye on this and make sure nothing worse is going to happen even though I told her that was what I was afraid of. She said she is convinced that something has attacked my system (maybe viral) and caused myopathy and that she can get rid of it. I trust her much more since this conversation, simply based on her tone, and I now feel like she is more concerned. We have to keep trying with these docs until we get to a point that we are comfortable with what they are saying. For the good of our physical AND mental health.
Sat. I painted a design on my 9-year-old's bedroom wall. I knew I had to work until it was finished because I would have muscle problems. I had a few touch ups on Sun. By Sun. afternoon and all of Mon. I had excruciating muscle cramps in my right arm and my right bicep/tricep looked like a bag of microwave popcorn. There were no random twitches, it was nonstop. My mother started to cry because, frankly, I think she may have not even realized what I meant by twitching. The cramping and twitching was also in my calves in ankles from getting up and down for paints. I decided what I was going to say to the doc before I called her and this time I did not let her interrupt me and make me feel helpless. I told her about the sx and that I was confused on whether she thought I was imaging sx, making them up, not having them at all, because she keeps saying she doesn't understand them. For the first time she seemed so understanding and nice. She explained the "science" and the "symptoms" not coinciding and she said she absolutely knows I am having them. She explained it is her job to keep an eye on this and make sure nothing worse is going to happen even though I told her that was what I was afraid of. She said she is convinced that something has attacked my system (maybe viral) and caused myopathy and that she can get rid of it. I trust her much more since this conversation, simply based on her tone, and I now feel like she is more concerned. We have to keep trying with these docs until we get to a point that we are comfortable with what they are saying. For the good of our physical AND mental health.
