Asking for an undiagnosed friend

    • Anonymous
      February 24, 2012 at 6:28 pm

      A friend of mine is having many symptoms of GBS or CIDP. I have CIDP, so I have been trying to help him get through the frustrations of a diagnosis. Long story shorter— the family doctor keeps having him go to the ER, which dismisses him as not knowing what his problem is.

      He has many of the same symptoms I have. Numbness in feet, hands, face with difficulty walking etc. I have certainly advised him to allow the doctors to keep options open as to what his problem is. However, they keep They keep saying, “It can’t be GBS because that is faster acting.”

      One symptom he has is he hasn’t had a bowel movement in 12 days. The ER is trying to alleviate this problem.

      However, have any of you had BM problems?? I am afraid what he has is not CIDP or GBS but something else more problematic!

    • February 24, 2012 at 9:16 pm

      so sorry to hear about your friend!! I wouldn’t think that the ER would be able to help him out with anything but the “acute” problems.. has he seen a neurologist??
      I had bowel problems preceeding my neuro symptoms.. but it was quite the opposite.. going from my “normal” once every other day to up to 20 times a day.. they are questioning if it was CMV virus, originally it was thought that it might have been a gluten/celiac thing.. so i’ve been gluten free since..
      however, I have read on here that quite a few people have had their intestines affected.. when this whole mess affects your autonomic nervous system, intestines can either speed up or slow down, I believe constipation is the more common result of it. I hpoe they get everything all sorted out for him! Good luck!

    • February 25, 2012 at 12:50 am

      hi pe teacher, I remember you from a long time ago!! We had the constipation problem, then a urination problem and finally breathing which wound us up in picu for 10 days till we could get ivig (was a shortage) Has the er done a spinal yet? We had our spinal done in the er, our not yet doc had spoken to me over the phone and agreed to see us because we had been through3 other neuros. He was out of town and felt we could not wait because it was moving upwards quickly, difficulty walking, holding things, constipation, urinating issues and now the breathing. So he set it up at the er, we went, they were waiting and boom, elevated protein, picu for ten days, not able to walk. So since he is a frequent visitor maybe they will consider.

    • Anonymous
      February 26, 2012 at 12:48 pm

      I’ve always been amazed how we are all impacted differently.

      It has been a while since I have been on. I do check in from time to time, but haven’t responded in quite some time. However, thank you for your responses. Now, if my friends can only get the doctors to listen and respond.