Keep The Faith

    • Anonymous
      July 14, 2012 at 11:54 am

      Yesterday I underwent EMG/NCV testing and saw my neurologist in New York City. I have been off of IVIG for more than six months (my last infusion was 1/9/12 – such things stick in one’s mind). My test results were consistent with the results from three months ago. I am “Stably abnormal”. But the wonderful thing is that I do not have to return to IVIG at this point, and do not even need to return to my neurologist for a year! I nearly burst into tears when he gave me the news. He told me that by six months, 75% of patients will have relapsed and will have had to return to treatment. But not me so far. The longer I stay off the IVIG, the better the chances I can continue to stay off. I do have some residual numbness, tingling, and pain in my legs and feet. My hands and feet are a little clumsy. Those are likely permanent. But I have no loss of strength, no loss of motor function, and no physical limitations whatsoever. I owe it all to Norman Latov, M.D. I love the guy, and together we stared down CIDP — one on the nastiest diseases known to man. I am the luckiest person in the world.

    • July 14, 2012 at 12:52 pm

      That is AWESOME! Congratulations!

      You are a true inspiration to us all! It can be done!

      (And thanks for posting what the dr said about 75% relapsing by 6 months. Emily will be getting off IVIG in the next year & that is good info for me to keep in mind)

    • Anonymous
      July 14, 2012 at 2:10 pm


      The latest newsletter from the GBS/CIDP Foundation had an article about getting off IVIG. I’m glad to see that it works. Kelly, the article did say anything about a relapse. If you are registered with the Form [snail mail address etc.] you should have gotten a copy of the newsletter [I think]


    • Anonymous
      July 14, 2012 at 5:02 pm

      That is optimistic news!

    • Anonymous
      July 14, 2012 at 9:34 pm


      I am tickled pink to hear this good news. It goes to show sometimes wondering what if can be wow I can do this”” It gives hope to so many of us who would love to have less infusions in our future and the possibility of it.

      Keep us in the loop about your progress.

    • GH
      July 14, 2012 at 11:15 pm

      That is wonderful news! Lucky is exactly how I feel, a year and three-quarters into recovery with no signs of relapse, despite lingering residuals. I never did take IvIg after two early loading doses which didn’t help much. I do take an immune system suppressant, however. I’ve forgotten — are you taking such drugs or are you drug free now?

    • July 15, 2012 at 4:21 pm

      Awesome news Goodney. We go to the neuro July 30th, we are going to try again too!! Saying prayers for you!

    • Anonymous
      July 15, 2012 at 6:01 pm

      At this time, I take no medication to treat my underlying CIDP. I do take Lyrica 450mg daily for pain, but that’s it. My neurologist told me that 50% of patients relapse every three month period off of IVIG. So within three months, 50% of all patients will have relapsed. Over the next three months (by the end of six months, total), an additional 50% of the patients who did not relapse in the initial three month period will have relapsed (or a total of 75% of patients up to that point), and so on. In other words, each three month period I complete without relapsing reduces my chances of relapsing by a further 50%. At present, I have a 25% chance of relapsing. At end of one year, my chances of relapsing would be less than 7%, and that percentage would continue to be reduced by 50% every three months I remained stable off of IVIG. Theoretically, one never has a zero percent chance of relapsing, but the odds begin to get very small after a year. Dr. Latov told me he would be much more confident saying I am in remission after one year of being stable off of IVIG.

    • Anonymous
      July 16, 2012 at 1:58 am

      Awesome News. Congrats and great to see there is hope!

    • Anonymous
      October 27, 2012 at 4:35 pm

      are you off the lyrica yet?    do you think it has any side affects? thanks for all your info about ivig….i have had 5 treatments over 6 months…just wish i had your dr.




    • Anonymous
      October 28, 2012 at 6:25 pm

      Hi Goodney,

      Glad to hear about your progress. My brother is 7 months into recovery and his habds and feet are still very weak. From your experience how long did it take you to regain basic functions with your hands. His grip strength was 0.5 and 0.6 at the beginning and is now 10 and 6 in each hand 6 months later. Normal grip strength for a 30 year old is 110 to 100. Does this slow progression make sense to you based on your experience? he has regained most core strength (including bicepts and thighs), but does it make sense that the core has improved rapidly compared to his hands which are still very bad.

      Let me know what you think,


    • Anonymous
      October 29, 2012 at 7:38 pm

      I still take 450mg of Lyrica a day. I would like at some point to begin reducing the dosage, with an eye toward getting off of it entirely. It does have side effects. I get some drowsiness, swelling of my extremities, weight gain, and memory loss. These side effects have lessened over the last three years. I am a little anxious about discontinuing the Lyrica because I was in such great pain before I began taking it.

      I was lucky in that my grip strength remained normal throughout the course of my CIDP, as did the strength in my lower extremities. My main symptoms were numbness, tingling, and pain, especially in my lower legs and feet. So I can’t identify with Larry’s  brother’s recovery.

    • Anonymous
      October 30, 2012 at 7:22 am

      Hi Goodney,

      so good to hear that. you are much better and off IVIG for a long time.

      How long since you got CIDP till now?  the topic you post since 2011, 2 years treatments, every two weeks 80 gm Gamunex C, till now.and longer the time . is it depens on your feeling or doctor test.

      I am a Chinese, it is diffcult find the Gamunex in China, how much does it cost in US.





    • Anonymous
      October 31, 2012 at 2:19 am

      I was diagnosed with CIDP in April of 2010. I received infusions of Gamunex C for 20 months. My last infusion was on January 9, 2012.  My treatment was based on both my feelings and the results of my EMG testing and physical examination. Gamunex C is very expensive, and because my insurance paid for it, I do not know how much it actually cost.

    • Anonymous
      November 29, 2012 at 3:32 am

      Hi Goodney,

      Thanks for your reply.  How are you now, did you still take some medicine to keep maintance?

      Did you still work now, or stay at home for rest?

      Keep The Faith.


    • Anonymous
      November 30, 2012 at 1:33 pm

      I am very fortunate. I remain stable with my CIDP. I am also able to work full-time without restrictions. I take only Lyrica for pain. I have good days and bad.