Reply To: Just diagnosed?

October 7, 2006 at 9:12 am

[QUOTE=JSeattle]My father is in the hospital right now — he just started his IVIg hours ago. He can’t walk, his left eye is drooping, he has double vision and trouble holding things. They did a spinal tap last night & found elevated protein levels. They ruled out stroke, tumors, the ususal. They think that it is GBS Miller Variant but have not confirmed it with us. He is 67, very healthy & did not have any viral infection prior to the sudden onset.

I had a few questions — this is so new to me. What’s the Miller Fisher Variant? How is it different than GBS?

My mother will not leave his side – I have a feeling we are in for a long ‘getting worse’ period. Any advice you can give to a concerned family member?

They want to move him to a therapy floor to start 3 hours of PT a day – not sure if insurance will cover it. He has been tested by the respitory docs, so far so good, but should we be worried that he will need a ventilator?

Anyway, I’m just so worried…and appreciate any advice.[/QUOTE]

My understanding is that GBS starts at the bottom up (feet) and Miller Fisher starts at the top (head lst) I also think it attackes different nerve systems – I had my cranal never attacked. I was diagnose with MF 3/06 due to double vision, losing my balance, tingling & numbness in my hands arms and some of my feet mainly on the left side (my proetin count was 93 from my spinal tap). 3/4 of my face was numb including my teeth and tongue – could not swallow and had to have a feeding tube – I had the IVG and stayed in ICU for 7 days then went to Rehab – my insurance did pay for it – I had Atena. I feel that Rehab pushed me just a little to hard (I feel from talking to other PT’s because MF & GBS are so uncommon they treat you like a stroke vicitim which is totally wrong) and because of a hospital I never received enough sleep. As soon as I got home I started recovering much quicker – I am still very tired all the time and still have face & mouth problems and eating.