Reply To: My GBS story

September 8, 2008 at 4:07 pm

Hi cack, Welcome to The Family. The difference between GBS and CIDP is the length of onset. From Feb to Apr sounds alittle too long for gbs onset, with no recovery. In my opinion it sounds more like cidp. I’m assuming your neuro has riled out the chance that the symptoms you are having are not linked to ebv. Since ebv is an autoimmune disease the chances that you have cidp are better. What were the results of your lp and ncv/emg? Have they done another ncv/emg to compare to your baseline one to see if there is any improvements or more demyelination? I don’t agree with the statement that he doesn’t think its cidp yet because you have not recovered yet, with gbs there is a recovery, with cidp there is recovery to an extent-that extent is different for everyone. Sometimes ivig doesn’t work for everyone, 70% get relief with ivig, and its the same with pp, 70% do well. If one doesn’t work for you than try the other if able to. Some people even use both treatments, first pp follwed by ivig. Your pain needs to be controlled. Neurontin or Lyrica or antidepressants are good. Neurontin is good for nerve pain where opiods don’t always work well. Pain is an energy zapper, recovery is possible without pain. If you aren’t already, keep a journal, it will help you chart your progress and it will help the dr treat you better. Please feel free to ask any questions or just vent when you need to. Take care.