April 4, 2015 at 2:36 pm
I’ve had at least 7 repeat of this stuff from 1984 to 2000. Nothing since 2000, except Tuesday I noticed foot drop (right foot) I was able to see my Neuro DR on Friday. Yup, that what it looks like. He set me on immediate Prednisone and scheduled EMG and NCS. That EMG wears me out physically , wish there was an alternative. Also I’ve never had a Nerve study. He also mentioned IVIG. Wow! lots of progress since the early 80’s. We had to borrow a spinner from the red Cross and set up all the necessary paper work and procedure’s for our hospital. Fortunately a new Dr who had a little experience with the spinner and GB treatment. But no IVIG and a real fight to get 5 or 6 Plasma Pheriosis treatments with insurance.
I had hoped I was done with this stuff and my Vascular Dr. said no more central lines. I even stopped coming to this board as I wanted to move on. Oh well at 72 I’m due to slow down anyway.
April 26, 2015 at 12:19 pm
You know I’m one of your original members way back. This organization had barely started with Mrs BENSON (?). My wife called her sometime it the 80-85 time period. We had one hard time getting the Spinner set up,a place,a Doctor (3) and a billing procedure. My Neuro group had not done this, my Kidney Dr had not done this for GBS so we were at square 1, with Mayo Clinic saying try Plasma Pheriosios. The only Dr’s who had half-way participated in this was the Vas-Cath guy. I’ve had three vas-caths get infected and boy is that trouble. Ive even been through at least 2 forum boards going down, with all old information lost. I used to converse with another GBS’er a Dr in England. I dont remember his name but he responded to everybody’s e-mail’s. I did a little reattach concerning the Neuro changes causing double vision (Some nerve group in the brain stem. I also dug out instances where the blood pressure control was affected and several other auto-control functions.
This board seems dead, maybe there are other boards with a little more traffic.
April 26, 2015 at 3:44 pm
I see that you have moved your post. This forum is the wrong place for it. The moderators do not seem to be able to move posts to the correct forum on this site.
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