Miller-Fisher variant

    • Anonymous
      August 21, 2006 at 8:42 am

      During the last week or so of March 2003, I developed a dry cough. A few days later my tongue became cold sensitive. I then developed problems swallowing and my feet began to “tingle”. On the morning of April 2, my face was partially paralyzed. I could not smile so I knew I was in trouble and to the emergency room I went. I was given a battery of tests and admitted to ICU. Slowly and surely, I lost control of the muscles from just below my neck up. I lost the ability to swallow and had to be suctioned. Three despairing days later, I was placed on a ventilator. A few days after that a trach was placed. I felt safe for the first time and began my recovery. My eyes were set in the closed position, I could not speak or breathe. However, I could write and my mind was clear and unaffected. I was able to give instructions to my grandson to take care of my affairs. My grandson did research on GBS and the statistics were favorable and gave me hope. As all of you know, Hope is a very useful tool to have in this condition. I was in ICU for about 3 weeks before being transfered to the hospital’s rehabilitation unit for another 30 days. My diagnosis was Guillain-Barre, Miller-Fisher variant.

      It has been 3.4 years now and for the most part I have recovered. I still lack complete control of my tongue and my speech is somewhat impaired. I do have some upper body weakness but I can eat, swallow and breathe on my own and for that I am grateful.

    • Anonymous
      August 22, 2006 at 3:44 pm

      I’m a couple years out from my bout with Miller Fisher. Isn’t it almost spooky to read some of these posts? We all differ a bit in the details, but the progression of the disease, from the onset of symptoms through the few lingering residuals, is remarkably similar. With just a few changes I could have written your story from my own experience. I guess that’s why they call it a syndrome.

    • Anonymous
      October 16, 2006 at 9:39 pm

      Csauls – did they dx’d you for GBS or Miller Fisher? I was dx’d in 3/06 with MF my systems seems to be similar to yours – I wonder if I did not have both. Had double knee replacments in 10/04 – and never recovered. I was told that one of the systems with MF/G BS is surgey – although the Drs tell me that the systems are 5 days out from MF/GBS!

    • November 6, 2006 at 10:49 pm

      [QUOTE=csauls]During the last week or so of March 2003, I developed a dry cough. A few days later my tongue became cold sensitive. I then developed problems swallowing and my feet began to “tingle”. On the morning of April 2, my face was partially paralyzed. I could not smile so I knew I was in trouble and to the emergency room I went. I was given a battery of tests and admitted to ICU. Slowly and surely, I lost control of the muscles from just below my neck up. I lost the ability to swallow and had to be suctioned. Three despairing days later, I was placed on a ventilator. A few days after that a trach was placed. I felt safe for the first time and began my recovery. My eyes were set in the closed position, I could not speak or breathe. However, I could write and my mind was clear and unaffected. I was able to give instructions to my grandson to take care of my affairs. My grandson did research on GBS and the statistics were favorable and gave me hope. As all of you know, Hope is a very useful tool to have in this condition. I was in ICU for about 3 weeks before being transfered to the hospital’s rehabilitation unit for another 30 days. My diagnosis was Guillain-Barre, Miller-Fisher variant.

      It has been 3.4 years now and for the most part I have recovered. I still lack complete control of my tongue and my speech is somewhat impaired. I do have some upper body weakness but I can eat, swallow and breathe on my own and for that I am grateful.[/QUOTE]

      I am very glad that for you your ER took you serious. God bless you for all you went through and stiil have to go through.

      My ER said I was drug seeking and said there was nothing they could do for me and sent me on my way. By the next day my whole face was paralized and they still said it was me. “Anxiety” I have little faith in the Minnesota Health care system.

      Take care.
      Schel

    • Anonymous
      November 7, 2006 at 11:35 am

      I’m just astonished, both through my own experience and the experiences related by so many other participants in this forum, at the ignorance and stubborness of ER docs and PCPs when it comes to this illness. Granted, Miller Fisher is an obscure variant of an obscure condition, but you would think they’d have enough training and exposure outside their own specialties to at least recognize it as a serious neuro condition and steer patients in the right direction for help. The constant litany of “it’s all in your head”, “it’s just anxiety” or “it’s your allergies acting up” that seems to run through all the posts on this site is infuriating. Are docs just too proud to admit they haven’t got a clue and punt the ball to someone who does? It makes me wonder about all the other things besides GBS/MF that I’ve ever seen a doctor for. When they’ve treated my various headaches and upset stomachs and chest pains and the like, have they just been making it up?

    • November 7, 2006 at 10:32 pm

      [QUOTE=Mike]I’m just astonished, both through my own experience and the experiences related by so many other participants in this forum, at the ignorance and stubborness of ER docs and PCPs when it comes to this illness. Granted, Miller Fisher is an obscure variant of an obscure condition, but you would think they’d have enough training and exposure outside their own specialties to at least recognize it as a serious neuro condition and steer patients in the right direction for help. The constant litany of “it’s all in your head”, “it’s just anxiety” or “it’s your allergies acting up” that seems to run through all the posts on this site is infuriating. Are docs just too proud to admit they haven’t got a clue and punt the ball to someone who does? It makes me wonder about all the other things besides GBS/MF that I’ve ever seen a doctor for. When they’ve treated my various headaches and upset stomachs and chest pains and the like, have they just been making it up?[/QUOTE]

      Mike,
      It is a sad thing. I am a nurse in a clinic, and have worked long term care and hospital. Now that I have seen how the whole thing works, it is sad, the bottom line comes down to $$. Some docs are better and some are not so understanding and there to get you “in and out,” and collect their $$. I do not have much faith in our ER docs, they are what we call “RENT A DOCS” this means they are highered from a “POOL” like a nursing pool. So that means they get the bucu bucks and there is nothing for them to get attatched to because they are basically there to fill a spot. Work their 8 or 12 hour shift and move on.
      Sad isn’t it?
      I could go on and on, but I am tired and need to hit the hay.
      Take care.
      Schel

    • Anonymous
      November 8, 2006 at 10:30 am

      Schel —

      Let me clarify one thing in my rant. My neuros were outstanding when I finally got to them. They immediately identified the affliction and began decisive agressive treatment. And they stuck with me until I was ready to take ownership of my recovery. My beef is with the front-line guys, and it’s not that they don’t recognize the GBS/MF when they see it. That’s ok. It’s an obscure affliction. But they don’t even seem to recognize the seriousness of the symptoms the patient is presenting. The take-two-aspirin-and-call-me-next-week approach is the worst possible response.

      Mike

    • November 9, 2006 at 7:16 pm

      [QUOTE=Mike]Schel —

      Let me clarify one thing in my rant. My neuros were outstanding when I finally got to them. They immediately identified the affliction and began decisive agressive treatment. And they stuck with me until I was ready to take ownership of my recovery. My beef is with the front-line guys, and it’s not that they don’t recognize the GBS/MF when they see it. That’s ok. It’s an obscure affliction. But they don’t even seem to recognize the seriousness of the symptoms the patient is presenting. The take-two-aspirin-and-call-me-next-week approach is the worst possible response.

      Mike[/QUOTE]

      Thats what I was trying to say also.
      Schel