I don’t think they know

    • Anonymous
      August 3, 2007 at 1:05 pm

      Thank you everyone for the answers to my questions. I seen my primary doc and will be seeing my neurologist on the 9th. My breathing is better right now but it seems to be okay for a few day’s then I start feeling bad again my doc didn’t think to much of it and was told to go to the er if I literally couldn’t breath or call 911. I talked about the increased weakness but she felt that my strength was good in comparison to what I was saying. It is like they think I am not feeling as bad as I say I am. I know I can walk it is just that my mussels hurt and my legs feel like they want to give out. Some day’s I have a hard time driving and some day’s I don’t drive because I know I am too weak. Can I get GBS back my symptoms feel more like the first bout of GBS then CIPD. I worry about my next appointment cause if he does the nerve test and shows nothing then they think I am over reacting. I am concerned that he will stop my IVIG which I get once a month. some months I get real good results and other months I don’t. I just don’t want to be told it is in my head again.

    • Anonymous
      August 3, 2007 at 4:52 pm

      I know EXACTLY how you feel Peggy. I had that visit with my Neurologist recently wherein he told me I had “good” strength in my arms and decent strength in my legs and I should be able to do more than I can. I do NOT think they understand the catastrophic weakness that your body undergoes. It’s one thing to say “I feel weak” but I usually say, to my husband anyway, “I feel like I’ve been hit by a train” or “I feel like I ran a triathalon today and I just woke up.” I vow to say one or both of those descriptions and at least five more in my next visit. They HAVE to understand that yes I can resist you when you pull on my arms for .5 seconds when I’ve been sitting in your office resting for an hour but I can’t do that for 5 minutes, and yes I can walk across your 8 x 10 office without falling down or even wobbling but try and watch me walk out to the car…

      Don’t worry, you are not alone – I do not think anyone who has not suffered a debilitating illness can possibly understand. I witnessed the transformation in a very close friend who has stuck with me through this whole thing. She has been very patient but I do not thing she REALLY understood how tired I was all the time until she recently got Lyme Disease. She has recovered fortunately because her doctor recognized it immediately (the rash is quite obvious…) and she was treated before any permanent effects happened but she endured two weeks of debilitating fatigue and gained a whole new understanding of my life.

      Hang in there, think of new ways to describe it. Try to describe it in numbers – doctors like data. Keep charts of your energy level vs. your activities so you can demonstrate that 2 loads of laundry = 3 hours of napping and wobbly legs for 2 days or whatever.

      I’ll be thinking of you.