It's 11 o'clock and I should be in bed. Well, I was in bed, but I just laid there with my eyes wide open unable to turn off my head. I have been having that problem a lot lately. Soooooo.... I decided to get out of bed and ramble on about all the crap that's going through my head on my blog.
Fore warning, this post may not be the most entertaining since it is 11pm. My wit went to sleep awhile ago. The rest of me just has yet to follow.
I do, however, have some news to talk about. I went back to the neuromuscular specialist today. As you may remember from my previous posts, I had seen him in August. He wanted me to see a pulmonologist there at KUMed, even though I had already seen one. I saw the pulmonologist at the end of last week. Here's a big surprise, she said my lungs look great. (I already knew that from all of the other tests that I've already had done on my lungs.) I went into the appointment today armed and ready with my list of questions as well as information I have received over the last couple of months from fellow POTSies and Dr. Google. I had planned on discussing having a muscle biopsy with him today. Interestingly enough, he suggested it before I even said anything about it. When he suggested that I have one done, I told him about a doctor in Atlanta that someone recommended. I was told that he's the best and he also does fresh tissue muscle biopsies, which are the best. Dr. Dick, the doctor I saw today, said that he didn't think there would be any need for me to go there. He said, "let me see if one of the neuromuscular specialists can come in and visit with you." I thought, "WHAT?" I thought he WAS a neuromuscular specialist. After all, I got his name off of the muscular dystrophy association website and the KUMed website said that one of things he specializes in is neuromuscular disorders. Hmmm
Anyway... The other doctor came in the room and was nice enough to spend 5-10 minutes talking with me as well as doing a quick exam. She proceeded to tell me (I'm going to really paraphrase here) that there's a 1% chance of me having blah blah blah, yada yada yada, or supercalifragilisticexpialidocious. Okay, in other words, I had never heard of the diseases she was naming off. She said that even if I was diagnosed, there's nothing that can be done anyway. However, she then proceeded to tell me that if I want to rule out a mitochondrial myopathy, which I do, then I would need to go somewhere to have a fresh tissue muscle biopsy. She told me about a place in Dallas, TX that does them and specializes in metabolic muscle diseases.
After the 2nd neurologist, the real neuromuscular specialist, left the room, Dr. Dick told me that he would give me a referral to whichever place I wanted to go for my muscle biopsy. We then discussed some blood work he was ordering. I have been getting petechial hemorrhages recently. I haven't had labs drawn since I was at Mayo last March, so he decided to check a few things out.
Well, it looks like I've reached Brooklyn. If I continue to discuss this with you further, I may fall.... zzzzzzzzz
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