So now it seems like I have polymyositis. I haven’t kept up with the updates. I got the MRI results back and I don’t have MS. I’ve had multiple doctor visits, another MRI to rule out stroke and various blood tests.
Let me take a step back. My CPK was extremely high (865) so I was referred to a rheumatologist. She had me refrain from any strenuous activity so she could retest my CPK (1092). It came back even higher so both doctors agreed that I should have a muscle biopsy. My ANA was also tested. It was positive 2 years back and came back positive again. My sister had Lupus so she made sure to put that in my chart this time.
I mentioned to the neurologist that my symptoms come and go so I was also tested for MG – myasthenia gravis . It came back negative as did the myositis panel.
Most of the time the pain had been bearable but there were some days, it was just horrible. I happen to be having one of those days when I saw the neurologist. She convinced me to take the medicine that she prescribed. It’s a muscle relaxer but mostly used as an anti depressant. It has helped a lot….I think. It could be a coincidence but I don’t think so.
During that same appointment the neurologist mentioned that she think I have polymyositis PM. I had already self diagnosed myself with inclusion body myositis IBM but I can see why they are thinking PM.
During my next appointment with the rheumatologist, I mentioned the choking episodes and difficulty swallowing sometimes. I haven’t had any choking episodes since March but I had some swallowing problems more recently. She told me to tell my gastroenterologist. My next appointment with her was the following week.
Since I have a HMO plan, all the specialists know each other. So when I met with the gastorenterologist the following week, she had already spoken to the rheumatologist. She said she had just gone to a conference and they talked about polymyositis. What a coincidence! And she explained that the muscle at the top of the esophagus is similar to the muscle in our thighs and such and that would explain why myositis affects the thigh muscles (for example) like it affects the upper throat muscles.
So I saw the surgeon last week and now waiting for a referral/approval to have the muscle biopsy. I had been “scared” about the biopsy but he made me feel a lot better. He said I would probably have it on a Wednesday and go back to work on the following Monday.
It’s been 3 months to the day that I had the EMG/NCS and was told that I have a lot of muscle damage. What an emotionally challenging 3 months this has been. And I do realize that if I have polymyositis, I will have to deal with even more challenging days and months.