Is my numbness CIDP? not sure about Dx

    • Anonymous
      February 2, 2010 at 8:46 pm

      15 years ago while in college I began experiencing numbness in my feet and lower legs. It started out as a tingling pins & needles sensation and then progressed to a numb heaviness in my feet and legs – it felt like my feet were made of cement, or like they were big blocks of wood. It was a feeling of heavy fullness in the legs all the way up to mid-thigh. Other times it felt like my legs were made of jello.

      After a lot of testing (including ECG, EMG, Nerve conduction velocity, no spinal tap), I was finally given a Dx of “mild case of Guillain-Barre” and was told there was no treatment until symptoms become more serious.

      Soon after I developed a host of other auto-immune conditions: psoriasis, reynauds, ulcerative colitis, uveitis, ankylosing spondylitis. It took a long time to get Dx’d for these conditions and get treatment (prednisone, methotrexate, Remicade) but things are finally somewhat under control.

      In the meantime, I still have the numbness in the toes, feet & legs – it comes and goes, but never really completely goes away. Now it’s mostly in the toes, and the front half of the foot, but it can extend all the way up to my knees on some days. The last few months the toe numbness is getting much worse – I have almost no sensation in my toes right now.

      Reading thru these forum postings, I recognize that whatever I have is very minor compared to the devastating effects of full blown GBS/CIPD, but it does affect my day to to day life, and after so many years I’d like to see if there is something I can do to address this situation.

      So, does anyone know if my symptoms (long term, low level, chronic numbness) are consistent with mild CIDP, or does this sound like it’s something else?

      Sorry for the long post.



    • Anonymous
      February 2, 2010 at 9:54 pm


      Sometimes GBS leaves residual damage. Many people get complete, or near complete recovery,meaning that the nerves remyelinate and become functional again. In some places, if the nerve does not, or cannot remyelinate the damage does not heal and the symptoms persist.

      I don’t know that this is what you have, but if it has been consistent for a long period of time, it could be residual, permanent damage from your earlier GBS bout. If it is, there would be symptomatic treatment for the pain, the pins and needles, etc, but probably not to make it go away.

      I don’t know for sure, ask some of the folks on the GBS side about residuals, they would know more. Ask your Doc about some treatment for the symptoms, there are drugs available.

      Good luck