• Anonymous
      August 6, 2007 at 7:19 pm

      I was dismissed by my neuro today, officially declared free and clear from active CIDP. I hesitated to post — I know I’m not the norm on the board. But numbness has eased considerably in my face, hands and feet. I still have developing CMT (mild, at this point) and I need to stay vigilant for recurring CIDP, but for now, I’m OK. It may only for days/months/years, but I think forum visitors hould know that it can be transient.

      Best wishes to all, you are in my thoughts and prayers,

    • Anonymous
      August 7, 2007 at 1:32 am


      Great news…I wish mine would dismiss me…lol. Congrats. to you and good
      luck, maybe it won’t come back…


      Miami Girl

    • August 7, 2007 at 7:38 am

      It’s a great thing to post, gives us all a little hope. Besides it’s good news!!! I’m really happy for you. Lets hope it last a very long time. Pattie

    • Anonymous
      August 7, 2007 at 10:03 am

      That is great news. Posts like this one give us all hope. Thanks for sharing the good news

    • Anonymous
      August 7, 2007 at 11:40 am

      Hello Meadow,
      That is good news for you. I too am no longer progressing or relapsing and really don’t need to see a neurologist, unless a need arises. Since I was severely damaged, I am left with alot of residuals, like extreme numbness and it is still unknown how much I can recover. I don’t know if CIDP is gone now since there is no cure or if I am just in a remission. I’m a realist and I keep it tucked in the back of my mind to stay alert for signs of the return of CIDP. My blessing is that I no longer need IVIG’s or other syndrome medications, only periodical physical therapy.


    • Anonymous
      August 7, 2007 at 9:25 pm

      Great news!!

      i was wondering–how do they determine when CIDP is in remission? Do you just go off all treatments and then after a certain period of time has passed know it is gone??

      I’m asking because for about a year my son didn’t have treatments until his symptoms returned and were deemed serious enough–which led to longer recovery times. We have now changed neurologists and have decided to keep scheduled treatments every three months. (this is the average amount of time Adam could go between treatments without symptoms.) Since his symptoms are completely under control this way, how can we know if it is because of the IVIG or if perhaps he is in remission?

      Also, how long did you have CIDP before you were “cleared”?

    • Anonymous
      August 7, 2007 at 11:08 pm


      I can honestly feel your hesitation in starting this thread, and I do understand where you are coming from. I give you a tentative CONGRATULATIONS, until such time as you are ready to GO CRAAAAZY in the knowledge that you are free … as the song goes …. [I]”You are free to live, you are free to dance, you are free to live your life, YOU ARE FREE”[/I]. 😀 Please keep us posted on how you are feeling.

    • Anonymous
      August 8, 2007 at 12:46 pm

      Helen that is really great news!!!!! I hope you never have to go through this again.
      God bless you we will pray for you

    • Anonymous
      August 8, 2007 at 2:31 pm

      Although I don’t know anyone here being a newcomer and all, your wonderful news is exciting just the same. Keep up the prayers and God bless.

    • Anonymous
      August 10, 2007 at 6:14 am

      Thank you for your supportive posts — this board is a wonderful resource for all of us.

      Kim, to answer your questions, I was treated with 3 loading doses of IVIG at 10 week intervals after extensive testing at Hopkins. Most of my symptoms are gone, but I do have lingering problems with my right foot. After the last one in December, my condition has remained stable for 8 months with no deterioration.

      I have a secondary condition, Charcot-Marie-Tooth, with “mild” nerve damage (determined from biopsy), so I’m not free-and-clear of neurological problems. I’ve been symptommatic for CMT since middle school, with episodic periods of marked deterioration and improvement. These periods were probably also recurring/remitting CIDP. I may well have improved this time without the IVIG.

      Best wishes to you and your son — a cure or at least better treatments surely are coming. I have a son with Type 1 diabetes, so I have some knowledge of how hard it is to have a child with a chronic, progressive disease.