numbness in face, head and trunk vertigo?

    • Anonymous
      August 11, 2009 at 1:05 am

      I have, since the first bout, always experienced numbness in the back of my head especially with the pressure of laying it against a pillow but now I am getting numbness on my back when I lean against a chair and in my face. my inner ear goes numb and that is the ear I have had 8 bouts of vertigo in the past 2 years, in. (only asymetrical symptom). it is kind of freaking me out and It gave me my first panic attack yesterday which made the numbness worse as my arms went cold from fear and adrenaline. please does anyone else have these symptoms.

    • Anonymous
      August 11, 2009 at 3:06 am

      Hi, Tara.

      In a word, yes. I’m essentially numb or tingling all over my body, including my face, ear canals, eyelids, lips and tongue — mostly tingling, but with the odd patch that’s completely numb. There doesn’t seem to be any rhyme or reason as to which is tingling and which is numb. (What I really hate is the tingling in my breasts — it might not be so bad if it were erotic, but instead it’s just annoying.:eek: )

      I don’t exactly have vertigo, but I can’t look up quickly without being thrown completely off balance, and have to be careful when drinking — it might be good to the last drop but if I lean my head back to get the last drop I’m liable to end up on the floor.

      So don’t let it panic you. It’s all in the joy of having CIDP.

      Keep fighting,


    • Anonymous
      August 11, 2009 at 3:22 am

      thanks for sharing It helps to here others have this. having had GBS in the past, numbness in my trunk is too reminicent of being in the hospital fully paralyzed. with cidp i am used to my outer extremities by now but the new stuff kind of freaked me out.

    • Anonymous
      August 11, 2009 at 12:25 pm

      I forget, are you getting treatment for your CIDP? If not then you need to get into your dr ASAP because it sounds like the demyelination is getting worse.

      New symptoms should not be popping up if you are getting treated. And if you are not getting treatment then it should start ASAP because the disease is progressing.


    • Anonymous
      August 11, 2009 at 9:48 pm

      No I have not started treatment yet. My emg was done only three weeks into this and it came up clear. because I was in full remission for 5 years there was nothing residual to show up either. now I hope the new doc will do another one. I have had two lps years ago that came up clear during the middle of a relapse so I will do an lp but I am not hopefull for any results with that. with the gbs history and symetrical symtoms along with the horrible pain in my neck that radiates, there is little doubt from me or my doc that this is cidp. I dont know, I will see hime tomorrow and I am going to be quite agressive with my insistance that this be treated one way or another. My mind keeps wandering and saying to myself that oh **** if it can go into my ears then can it go into my throat or if it can go into my trunk gan it spread to my diaphram. I am really mentally on edge these days. I just have to stop myself from letting my mind run into the future and deal with what is happening today.