• January 9, 2011 at 9:24 am

      I have been treated with prednisone only since first diagnosed 2 yrs. ago and have weaned down to 5mg. every other day for the last 6 mos. My Neuro stopped the prednisone 2weeks ago after 2 years of continued improvement and and doesn’t expect me to backslide. My top-notch doctor said I will keep healing and the rest of the nerves will slowly come back. I am cautiously accepting his prognosis even though from day 1 he has never given me any false hopes.
      Fortunately all the pain disappeared after the 1st three months of prednisone treatment. It might be interesting to note that when 1st diagnosed I began taking 600 mg of alpha lipoic acid, a nutrient,along with 2000mg. of acetyl carnitine, an amino acid. Later when I learned about clinical trials.gov I doubled these amounts and am still taking them. There’s no magic bullet, but I’m wondering if the prednisone and nutrient combination made the healing better and faster.
      I also have deep faith in positive energy, prayers, God’s Blessings and also the miracle principle. Sometimes just a small miracle can have sweeping changes in our lives. I’m 72 and 1/2 and I don’t take off running or play tennis, but I easily take long walks and can manage some simple dance steps and that’s a blessing!
      We are all like snowflakes when it comes to symptoms and treatment plans.
      I have been uplifted by the strength, courage, knowledge and helpful sharing that has been generated by the members of this forum.

    • Anonymous
      January 9, 2011 at 8:08 pm

      [FONT=”Microsoft Sans Serif”]KatyK,

      i am very happy you are doing so well! stay well…



    • Anonymous
      November 24, 2009 at 8:53 pm

      Alice has been home for 2 weeks now and is continuing to improve. Just as Dr Burt told her, some days she has more energy than others, but all in all she feels that the CIDP is out of her body, and pains she feels come more from muscle soreness than anything else.

      Her strength is increasing, and we try and make it out every day for a walk. As she is regaining muscles she hasn’t had in such a long time, there are days where she feels the soreness of a heavy work-out – but, as she says, this is good pain.

      She does need a lot of sleep – clearly her healing body requires it. She wakes up early – but goes to sleep late afternoon..

      ..so we won’t be having any big thanksgiving dinner – but the spirit will definitely be there – as we feel so thankful for this treatment, and all our friends and family who made it possible.

      Happy Thanksgiving to You.


    • November 24, 2009 at 9:15 pm

      I’m so happy to hear the great news.
      Have a beautiful Thanksgiving.

    • Anonymous
      November 24, 2009 at 9:59 pm


      That is great news!
      May Alice continue to get her strength back and heal.

      Wishing you both a Happy Thanksgiving.

      Thank you for the update.

    • Anonymous
      November 24, 2009 at 10:39 pm

      Of course, you are going to be tired? After all, you just had your entire immune system ‘manipulated’. There must be a WHOLE lot of healing going on. And, I suspect that is an understatement. That it all is WORKING is beyond SUPER in my humble estimation? While you can and to be sure? Go and get as much PT as you can while you can. IF it lasts? You are ahead of the game. If not? [And It will last] you are still way ahead in the survival game. I have been crossing my fingers and legs in anticipation…. That THIS WORKS! BTW? the toes don’t work and the eyes are spastic…so you are getting the best from my cyber world to yours!
      Hope for the future!

    • November 25, 2009 at 12:45 am

      Are you guys home, or still in Chicago? If you guys are still in Chicago, maybe you guys could borrow a wheelchair from NW and get in a cab and go to the Mus of Science & Industry. It is the most wonderful Christmas display you have ever seen. Glad to hear Alice is getting stronger. Happy Thanksgiving to you both, lots to be thankful for this year for you guys!
      Dawn Kevies mom

    • November 25, 2009 at 10:57 am

      Great news on the recovery. Please keep us posted.

      Happy Thanksgiving.

    • Anonymous
      November 26, 2009 at 1:14 pm

      thank you for your kind messages

      dawn, we are home in SF – turns out we only needed to stay a couple of extra days after discharge – we’ll keep all the museum tours for our follow up visits as alice’s immune system needed to rebuild itself before exposure to crowds

      Happy Thanksgiving to you all –

      we feel so thankful for the boundless support we’ve received on this forum.