June 19, 2008 at 8:06 pm

Wow, this really sounds frustrating. You will find that GBS or CIDP is extremely variable in different people and despite what textbooks say, there are a lot of cases that do not fit the typical pattern. There are a few things about your description that to me are a little concerning for this NOT being CIDP. 1. Vision is a central process–not peripheral. Your blind spot was very transient, so this might not really be relevant, but with CIDP you really should not get blindness (double vision, blurring can happen because the cranial nerves that are peripheral can cause these but the vision nerve itself is really a central nerve). 2. Your symptoms fluctuate more rapidly than I have heard in other GBS/CIDP cases. Most of us have changes associated with fatigue over the course of the day or after doing too much. 3. Your symptoms are not broadly distributed. GBS/CIDP is often stocking and glove or pretty big patches of area at the ends of the arms or legs and symmetric from one side to the other. Lots of people (including me) have some assymmetry. It is usual for someone to have this severe problem with the right arm and the left be normal. Again, many of these can happen in CIDP, but they are atypical.

The tests you need to assess for CIDP are spinal tap to look at protein and cells AND an EMG. You should also be tested for MS with the spinal tap.

It seems to me that at the young age of 20, another thing really to consider is an arteritis or vasculitis. Temporal arteritis can give severe frontal headaches and affect vision. You should have lab tests such as an ESR and ANA. Spasms in vessels can cause transient pain and neurologic symptoms.

Please also make sure that you take the MRI scans themselves to the new neurologist so that he/she can relook at them especially for signs of thickening of nerves and at the brainstem. Sometimes subtle things can be missed.

Best of luck and I hope you all figure out what this is and you feel better.
WithHope for cure of these diseases.