Hopkins as well

[QUOTE=Julie]Dick,
I’ve sort of been in the same position – my local neuro sent me to the university because he didn’t know enough. The agreement we came to is that once we get my treatment routine stable via the university (2.5 hours away) then the university doc will brief the local doc on my condition and treatment and then the local doc will use the university doc as a backup in case something weird happens. Since I get my IVIg treatments at home I don’t end up seeing the doctor all that often so the drive is less of a pain than it could have been. I feel your frustration, we sort of messed around locally for 14 months before going to Hopkins and haven’t regretted it since.
Julie[/QUOTE]
Hi ,my husband will begoing to JohnsHopkins on Monday.He was diagnosed with chronic GBS and CIDP.In four months he went from working to a wheel chair.He suffered a seizure on fathers day.He seems to be getting worse by the minute.Is this disease fatal? Were you happy with JH? He is 53 and looks 93!!! I am scared .Most of his tests come back negative.He had late in life immunizations when he went to Hurricane Katrina.We also have a 2.5 hr drive .NJ.Thanks for listening!