Discussions By Condition: Nerve conditions

Miller-Fisher/Guillian-Barre'

Posted In: Nerve conditions 1 Replies
  • Posted By: Anonymous
  • May 18, 2010
  • 02:21 PM

I hope to help others by letting them know of my event:

Two months ago, I went to bed with no symptoms. I woke up the next day and could not focus my eyes. Three days later, I went to bed and woke up to paralysis of my inner "face" for lack of a better term. My throat was numb, I could not speak without it sounding hypernasal, and I could tell that inside my sinuses and other internal places there was no feeling. The day after that, my hands and feet went numb.

Two MRIs, a spinal tap, an EMG, and a thousand other tests later by neurologists, opthamologists, E/N/T specialists, and others at two hospitals including the wonderful U of Michigan hospital, I find that I have the Miller-Fisher variant of the Guillian-Barre syndrome. It turns out that it was being called a 'mild' case thus I was/am very lucky. Some have total paralysis of facial muscles and also have a difficult time breathing due to not being able to keep breathing passages open.

I had first thought I was allergic to a medication that I had just taken. I had been feeling very run down/tired and was also suffering from some abnormal anxiety that I had not felt before. At the time, I was under a lot of stress so I just wrote it off to that until my eyesight went blurry.

One symptom that I did not realize that I had that apparently was the final kicker to the doctors that I did indeed have Miller-Fisher was when they asked me to walk across the exam room. Fine. Vision not great still but walking wasn't a problem. Then they asked me to do it heel-toe ala' putting one foot in front of the other. I couldn't do it. It wasn't like I was losing balance....I just couldn't even take a step. To the specialist, it was an "aha!" moment.

Two months later, I am happy to report that most symptoms are now gone. In fact, it only took a week or so for all of the symptoms other than the vision to return to normal. My vision is still a bit off - but it's definitely getting better. What I mean by 'bad vision' was that everything was double. After a day or two, I could focus forward but when I tried to turn my eyes, it was all double vision. Turning my eyes totally to the left and especially the right are still not perfect as it takes a moment or two to focus when they return forward....and it's still double vision to the extreme left or right when I look in those directions without turning my head. But again, it is improving.

If this helps anyone, I am happy. It was very scary when the doctors were initially talking about MS, lupus, or worse. However, the prognosis was that it was probably going to clear up on it's own (wasn't given transfusions as the case wasn't extreme) and that I would just get over it. A very scary moment in my life. I hope that this message and any other subsequent answers that I could give will help keep the fear level down for you if you are suffering the same condition.

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  • I hope to help others by letting them know of my event: Two months ago, I went to bed with no symptoms. I woke up the next day and could not focus my eyes. Three days later, I went to bed and woke up to paralysis of my inner "face" for lack of a better term. My throat was numb, I could not speak without it sounding hypernasal, and I could tell that inside my sinuses and other internal places there was no feeling. The day after that, my hands and feet went numb. Two MRIs, a spinal tap, an EMG, and a thousand other tests later by neurologists, opthamologists, E/N/T specialists, and others at two hospitals including the wonderful U of Michigan hospital, I find that I have the Miller-Fisher variant of the Guillian-Barre syndrome. It turns out that it was being called a 'mild' case thus I was/am very lucky. Some have total paralysis of facial muscles and also have a difficult time breathing due to not being able to keep breathing passages open. I had first thought I was allergic to a medication that I had just taken. I had been feeling very run down/tired and was also suffering from some abnormal anxiety that I had not felt before. At the time, I was under a lot of stress so I just wrote it off to that until my eyesight went blurry. One symptom that I did not realize that I had that apparently was the final kicker to the doctors that I did indeed have Miller-Fisher was when they asked me to walk across the exam room. Fine. Vision not great still but walking wasn't a problem. Then they asked me to do it heel-toe ala' putting one foot in front of the other. I couldn't do it. It wasn't like I was losing balance....I just couldn't even take a step. To the specialist, it was an "aha!" moment. Two months later, I am happy to report that most symptoms are now gone. In fact, it only took a week or so for all of the symptoms other than the vision to return to normal. My vision is still a bit off - but it's definitely getting better. What I mean by 'bad vision' was that everything was double. After a day or two, I could focus forward but when I tried to turn my eyes, it was all double vision. Turning my eyes totally to the left and especially the right are still not perfect as it takes a moment or two to focus when they return forward....and it's still double vision to the extreme left or right when I look in those directions without turning my head. But again, it is improving. If this helps anyone, I am happy. It was very scary when the doctors were initially talking about MS, lupus, or worse. However, the prognosis was that it was probably going to clear up on it's own (wasn't given transfusions as the case wasn't extreme) and that I would just get over it. A very scary moment in my life. I hope that this message and any other subsequent answers that I could give will help keep the fear level down for you if you are suffering the same condition. Thanks for your input I had the same was told I had MS and yes was as scared as you. My concern now is that I am still seeing double, single vision came back to me within 2 weeks of the IVG. And now 3 months later I have to take naps every day. So it seems I am getting worse. I have been back a couple times for 3hour IVG treatments and don't seem to be getting any better.
    csmcovga 1 Replies
    • October 16, 2010
    • 00:32 AM
    • 0
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