possibly a dumb question

    • June 29, 2007 at 5:40 pm

      i was given IVIG and PE when I was first diagnosed with gbs, neither worked. Is it possible that after eight and a half years one of them might make a difference? I am in a wheelchair and still unable to do many things .

    • Anonymous
      June 29, 2007 at 9:22 pm

      shirley, unless your immune system is still producing the bad gbs antibodies, neither ivig nor pp will do any good. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 29, 2007 at 11:35 pm

      Hi Shirley,
      I think I would ask the doctor to check to see if the GBS is active and if so then definitely treatment would help. Never stop until your questions are answered.

      Take care


    • June 30, 2007 at 4:37 pm

      I was diagnosed in 1998, how long can gbs be active?

    • Anonymous
      June 30, 2007 at 5:01 pm

      I always thought GBS lasts about 4-6 weeks then if you get worse after 8 weeks then it’s CIDP. There is always a chance to get GBS again but the chances are very small. But some people may get CIDP which is almost like chronic version of GBS. Then if you have that and get worse then treatment is good. If the Neurologist does the nerve testing and it shows your nerves are worse then IVIG or PP would help.

      Talk to you DR or Neurologist.


    • Anonymous
      June 30, 2007 at 5:47 pm


      ditto sherry & sue. if cidp, it can produce gbs antibodies for a lifetime. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 11, 2007 at 7:55 am

      Unfortunately there are a number of people who are still in wheelchairs or severely disabled years and years after the GBS attack. The ‘active’ part of GBS, to where it reaches its worst point is 4 weeks. After that point, if it continues to get worse it is not considered GBS, but possibly SIDP which ‘stops getting worse’ after 8 weeks. If you are not deteriorating, and pretty much stay the same (abesides some flare ups of residuals), then I think unfortunately it is the damage that was done by the GBS. My best friend walks with great difficulty on crutches (she would do better in a wheelchair), and has done so since 1987. Her hands have never straightened, and she really doesnt have any feeling in her feet and most of her legs. She has stayed the same since her attack unfortunately. She has no pain and not extreme fatigue like me. I also know of some who 10 or 15 years down the line start to get feeling and movement in their feet – dont you wish we know more about this horrible syndrome?

    • Anonymous
      July 11, 2007 at 12:14 pm

      Shirley, If you are still having such difficulties after 8 years, why not get a second opinion, emg/ncv, lp to check the protein levels, and go from there. If ivig and pp didn’t work, and obviously you are having alot of problems still, the dx might have been wrong. Were MS, ALS, MG, and CIDP all ruled out 8 yrs ago? There are other syndromes and diseases that have very similar onset, symptoms and different results to treatments. Since ivig and pp didn’t do anything, although you might need more of the same treatments to get results, there is other meds that are used in CIDP that might work for you, but you need to talk with your neuro. Take care.
      Just playing the Devils’ advocate here:D

    • Anonymous
      July 12, 2007 at 7:57 pm

      Dear Shirley,

      Most GP’s, emergency doctors, and some neurologist know little or nothing about GBS or treatments available. As Cheryl suggested above, you need to see a neurologist familiar with GBS/CIDP and have an updated EMG/NCV which checks for demyelination and denervation. If your immune system is still producing autoantibodies attacking your myelin sheath, then you probably have CIDP, and IVIG treatments would be a great benefit to you.

      Warmest regards.