Hello Shannon

November 12, 2006 at 10:58 pm

I was told I had GBS/Miller Fisher variant a year ago!

Started in my hands and feet and worked up my arms and legs with off and on numbness. At the beginning I also had double vision for 10 weeks. My eyes are still getting better and the field of vision is doing a good job of correcting itself….slowly.

I thought I had a stroke and went to the ER. After a few tests they said I had MS and kept me for observation and more tests. Quickly after all my tests kept ruling out all types of illnesses they come up with the GBS and tacked on the Miller Fisher variant because they said this started in my eyes which it did not it started in my hands and feet. Within a few days I was put in the ICU because things started to fail. Walking and turning over or arms able to work, swallowing, breathing and the rest of my systems stopped and I was put on life support. During the first week they had already started me on the IVIG and I did not respond. They transferred me to another hospital that could give me the Plasma Exchange. I was in the ICU there for 3 more weeks. Had complications with the ventilator and my lung colaspe when the trache failed. I had problems with the ports they put in both of my shoulder/chest area. Eventually I got pneumonia that they caught very quickly! Remember I had a Severe case of Guillain Barre Syndrome.

A year later I am still having burning and tingling but don’t take any meds and my hands from the wrist down are numb and that amount changes from time to time. Sometimes my whole foot and some times just my toes. I do notice when I get into the shower I look down to see if I have socks on. It feels weird like wearning tight socks.

I was not able to move so I did not have any of that light headed and dizzy feeling or headaches.

I did get chills the one day from the oxygen to the trache and that gave me strong quivers under the skin that my friend could feel They rippled from my shoulder to my waist and down that leg. My friend figured they were from the oxygen breeze and put a wash cloth under that area and they were ended. I did not feel the cold and I would have never guessed that they were chills. I also had itching in my lower back and it would wake me up. Felt good when rubbed and lotion was put on it! Turns out that was major back pain when I finally was able to feel it correctly.

When I would walk or move a muscle I would feel that muscle madly shake and the whole body was responding to the nerves trying to send a message it just got weird and come out as vibrations even to this day! When anyone touches or rubs my back the entire area does that. It is some times overwhelming. It will do it to loud noises too. I had a couple of bad experiences after I started going out in public. Once I was under the steeple when the church bells chimed out NOON…..and after lunch I was under them again when it was One o’clock the vibrations were overwhelming and I had to just stand there till they were done. I laughed but it was not funny both times. Another time I was in the pits at the race track and a car come thru the pits and I knew he was coming…..he come around the corner and towarad me. Then he gave the motor some gas when out of gear and the noise instantly sent a GREAT pain up my spine from my tail bone. As it went up toward my head my shoulders went up and my head come down like a turtle pulling into a shell. My toes also pushed off the ground and I left the ground like a rocket. I know he wondered what this woman was doing. I could not have done that if I tried. Everyone of my friend come over and grabbed me. They were afraid that I was going to fall or pass out! Now noise does not bother me as bad but somedays the tv gets turned up and that creates that vibrating. I don’t get pain with it just the thrill. But I know it is serious and frustrating ….leaving me with an uncertain feeling that can be overwhelming.

My right eye lid gets droopy if I get tired and that is a signal for me to be taking home.

I do not have any reflexes. Doctor said he is not concerned they may never come back.

Please let me know what the new neurologist thinks. I hope you get answers it is so frustrating.

I know of some people around here that had GBS and mild cases that only lasted a few weeks. One was a woman that colasped the day before her wedding day and the other was a young father that was raking leaves and colasped and recovered quickly. Still have tireness to this day. The young man was 9 years ago when he got his GBS.

hang in there!