Wow… very informative and THANK YOU.

July 2, 2008 at 7:08 pm

Thank you guys for your responses… Dawn, that was so informative for me. I’ve been taking notes on your posts lol! I actually have had a couple instances of droopy eyelid that lasted up to 12 hours. That particular symptom has not returned for a while, but I can tell that the muscles around my eyes are involved in the problem. I used to have that transient double vision because my eye would literally “get stuck” and I couldn’t force it to align with my other eye — that would be muscle related, right? I’m not sure what the deal is with the uneven pupils, but even though they’re even now they seem hyper-sensitive to light and darkness… getting TOO big or TOO small when they react. I’ll do a little research on the Miller-Fisher to see if I have more symptoms that match it. That idea had popped into my mind earlier, but I dismissed it because of a lack of information, and not really being sure if I even HAVE CIDP. The binder was a brilliant idea and one that I think I will adopt. Thank you! Deanop… your comment about the numb tongue was a definite red flag for me. It went away yesterday afternoon and hasn’t returned, though I’m still having respiratory problems. I’m going to pay close attention to everything else now.

The update is: I called the neurologist’s office first thing this morning and explained the severity of my symptoms. The receptionist talked to the office manager and informed me that there was an opening for tomorrow morning at 11:30! I’m going to try to be aggressive and make it clear the number of problems I have been having as well as their frequency and severity, and push to have more tests done. My old neuros were basically dismissing me altogether, even saying that it wasn’t neurological, and if it was, it wasn’t serious. All of this information is making me a little more ready to get in there and take charge. Thank you SO MUCH for all of your help. I will message you if I need more, Dawn. 🙂