I was wondering if anyone has heard of this disease. And no, I"m not sure that I have this particular disease or still if it's CIDP, but I have read that this disease can often be mistaken for CIDP.
It has to do with your potassium levels. Your potassium levels can read fine in a normal blood test, but as it exchanges in your body is where it becomes the problem. Your body may give you to much or to little is the best way to describe it in regular terms.
For quite awhile I get these attacks where my legs go weak and then I can't walk and then it went into my arms and whole body. My first concern was I was having a stroke, but then a friend saw it happening to me and thought I was having a seizure. I am fully aware during the attacks and the best for me is to get help to bed or the quickest place to lie down and sleep it off. They mostly have come on in the evening, especially after a nap but have happened even when not napping.
My neurologist suggested that this might be the cause of what is going on instead of the CIDP. I was suppose to have a nerve biopsy and then I'm not sure if because of this it never happened or what. I am very trusting of my neurologist even though at times I don't think he moves as quickly as I wish he did. I will be able to discuss this more at my next appointment, but not until December.
I still have pain, but at my worst last winter, I'd wake up in the middle of the night with my whole body in pain and not be able to move at all. I'm already starting to wake up again with the pain in my shoulder and I know it's the weather changing from the summer to winter. I live in the south and that's how it seems to go here. I'll have to wait and see this next colder spell where we go to the 40's at night and 60's during the day if things get even worse. Cold seems to be a huge trigger in my over all wellness although the paralysis episodes continued through the summer.
Just like my nerve studies were really bad during the winter and when spring came they seemed to get better. Anyway I just wondered if anyone had heard anything about this. I went on the Periodic Paralysis site and it almost seems like the same as here. Everyone feels pain and has the same problems. I just don't know if anyone else with CIDP experiences these paralysis problems or if it could be a combination of both.
Thanks for any comments!