Today I had my six monthly visit with my neuro consultant. He is mostly concerned with how well I am doing on the IVIG as he has to get my medication approved each time.
We talked about my chest pain which I have been told is musculoskeletal and he said it could very well be part of my condition. This is both reassuring and despairing. It's a new pain that I will just have to put up with forever. Trust me, I'm used to this, give me six months and it will... oh yes, that chest pain, it's annoying but I'm used to it now.
Just to put my mind at rest he is going to request an abdominal and chest CT Scan to make sure nothing else is going on. If it is something else then it will be picked up. It might even be something that can be fixed, I can only hope.
We talked about whether it was possible to have spasms while asleep. I know that I do, and my husband Graham can confer. He has had to wake me up when I'm having a spasm. Yes, they still hurt but sometime it takes a while for them to get so bad that they wake me up. But, I did get into a discussion with a fellow sufferer online who claimed that you can't have spasms while sleeping and you have to wake up first. My consultant explained that because SPS is a condition that effects the Central Nervous System then the person does not have to be awake for it to be active.
My consultant asked me to make a video talking about my condition, how it affects me, what triggers spasms, and how I feel after IVIG. He will use it to show his student doctors.
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