help, advise, support… please

    • Anonymous
      November 14, 2012 at 8:01 pm

      Hi all – I first posted here back in august of this year 2012.  My 11 year old daughter was diagnosed with GBS and given ivig in the NICU and sent home- therapy, orthotics, rx and thats it.  Here I am 3 months later, new symptoms now numbness in fingers and arms… previously just the legs) and more mris .. i am looking for a neurologist in nj… anyone know of a good one please reach out to me either here or my personal email is what other treatments could be done? all the current neurologist says is the mris are consistent with GBS, meanwhile my daughter is getting worse  so frustrated….

    • Anonymous
      November 15, 2012 at 5:04 am

      Finally, I can post.  Hi, my name is Karen and I live in south Jersey and had the best results at Jeff in Philly.  My mom has CIDP, but at the time we had no idea about this disease, that is when we found this site.  Her Doctor moved to a hospital in the south west but you can’t go wrong at Jeff’s nurology’s department.  I emailed you at your personal address, we can talk there or here, as you feel comfortable.


    • GH
      February 4, 2013 at 7:11 am

      ysaez, CIDP is often confused with GBS because the symptoms are similar. Both are distinguished from other neuropathies by a spinal fluid test and nerve conduction tests. But GBS reaches its lowest point in eight weeks or less. If the condition is worsening after eight weeks, it is likely CIDP instead. I was initially diagnosed with GBS, but am now considered to have CIDP.

      CIDP is treated with IvIg, as is GBS, but also steroids (not used for GBS) and some other drugs. Some patients have regular IvIg infusions. Sometimes plasme exchange works better. I had IvIg, which wasn’t much help, then had PE. I also took steroids, but am no longer on them, and immunosuppressants.