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Living with Polyneuropathy CIDP, GBS, & CMT

Recurring difficulties with Miller Fisher


#1

My neurologist believes that I had the Miller Fisher Variant of GBS which occurred 2 & 1/2 years ago following a Tdap vaccine. Initially, I had a sharp persistent pain behind my right eye and numbness in my face which was followed by ascending numbness/weakness in my legs, arms and other parts of my body. Sometimes when I eat late for some reason and get a hunger headache or a sinus headache, I get pain in that previously affected nerve behind my eye. It takes it a couple days for the pain to finally go away but it always does. I just wondered if anyone else has had this problem? I also had trouble turning that eye before and when I don’t get enough sleep or get tired, I notice that I have trouble again to an extent. I’ve accepted this as the new “norm” but always wonder if I am not alone in my experience.


#2

I’ve just had the regular GBS but last year around this time I began seeing double in the afternoon. I’ve been to the eye specialist who advised patience and after a year it’s definitely on its way out.


#3

That’s so good that you are recovering! Wish I understood more about nerve damage and their response in recovery.


#4

Started getting another sinus infection and got that same excruciating pain with the same eye that I had when this all began and I had trouble opening the opposite eye when the pain was at it’s worst. My neurologist thinks it is due to the previous nerve damage and overactive immune system with any sinus infection. It is definitely not a sinus or tension headache. I just wondered if anyone else experiences this ever after Miller Fisher. I am 3 years out and have very few lingering effects but this one is tough! I really dread the cold and flu season and I work in the healthcare field. I had 6 MRIs and an MRA when all of this initially occurred that were all normal. So no brain or vessel issues. Luckily, I’m not sick often!