waiting, waiting, waiting….

    • Anonymous
      March 8, 2010 at 4:00 pm

      Hi all,

      Just wanted to let you know that I did get an appt. with Wash. U. on April 1!!! I’m excited but scared cause I don’t really know what to expect. I was
      luck enough to get an appt. with head of Neuro. Anyway, things aren’t going
      real good. Last week my hubby had to have a stent put in (he had quadruple
      bi-pass surgery in June and he is doing really well now and we both hope this takes care of things. Sorry if my typing is opff, my right hand goes cold and hurts when I type. MY insurance co. isw hee-hawing around in granting
      any more IVIG treatments, at least I hav e’nt gotten an approval yet. My
      lasty one was a month ago. Things really havent improved that much, some
      has improved buy others got worse. My bowels are all messed up now and like I said, I can’t seem to type worth a poop anymore. (No pun intended).
      Please keep my hubby in your prayers everyone. Thanks,
      Ms. Judy

    • KatyK
      March 8, 2010 at 4:35 pm

      Hi Judy,
      I’m glad your hubby is doing well and that he appreciates a caretaker like you.
      I also hope your approval for IVIG comes through soon also.
      In the meantime will say prayers that you will feel better and your hubby stays safe and that your appointment April 1 gets here real fast.
      My patience level is low so I know how waiting can be frustrating.

    • Anonymous
      March 8, 2010 at 5:07 pm

      [FONT=”Microsoft Sans Serif”]ms judy,

      big hugs from sophie and i and many positive thoughts for both you and your husband…

      have you considered taking probiotics to help with you GI problems? i take them and find them quite helpful.

      again, hugs and thoughts your way!

      alice & sophie[/FONT]

    • Anonymous
      March 8, 2010 at 8:53 pm

      They’ve got a great web site
      url-http://neuromuscular.wustl.edu/alfindex.htm-url and go to their index.. Diagnosis is far harder than it seems on the surface…until you look at this index. Also go to the top and take a look under ‘ lab tests’, and it’ll give you insight as to the multitude of tests that it can take to get any diagnosis. Go down to the ‘n’s’ and look at neuropathies…go from there. Lots of doc tech talk? But it IS sort of in ENGLISH and w/a medical dictionary on another screen? You should be able to translate most of it and get the ‘gist’.
      Insurance companies are not kind these days, nor are they acting sensibly at times. Call your insurance co’s 800 # and ask who you can speak to to help you…sometimes it works, sometimes not… depends on the insurance company and the luck you have IF you get a good insurance rep.
      Ask your friends or relatives if one could come and help you for this? Make it clear that it’s a one or two time thing… and that IF you get help? You’ll be better to take care of your hubby. Make sense?
      Hoping for you and wishing good things to come out of this…help medically and other sources as well.

    • Anonymous
      March 9, 2010 at 3:42 pm

      Thanks so much for the reply. Yes Alice, I’v e tried everything!! I take Miralax in P.m. along with colace, colace in a.m. and drink lots and lots of
      water, eat right, and walk as much as I can, and still Nothing!! I hav e very little
      feeling down there anymore and I can just feel that my muscles aren’t working
      like they should. and thanks so much for the web sight, I will look it up
      as soon as I get a chance. My hubby is doing fine and really doesn’t need help. He did after his big surgery though, that was really hard on us both and
      we did have help, my three sons were a godsend! I guess my question is,
      is it normal for CIDPers to have numbness or lack of muscle control below the
      waste?? I dont remeber anyone really talking abou7t numbness in the trunk area. Any feedback would be gratly app. Got to go, hand too cold.
      Mrs. Judy

    • Anonymous
      March 9, 2010 at 6:44 pm

      [FONT=”Microsoft Sans Serif”]dear ms. judy,

      yes, numbness below the waist is normal enough for those with cidp– at my worst– i was numb up to my waist.

      i wish you all the best in getting a handle on the progression of your cidp.

      big hug,
      alice[/FONT]

    • GAT
      March 9, 2010 at 8:32 pm

      I am like you and for over a year it seems each day is different. All of my pain started in my groin and lasted for three months. Now it is in my stomach and bladder. lately it is in my feet and hands like the books say it should. It’s just an amazing illness and hard to figure. GAT