Discussions By Condition: I cannot get a diagnosis.

diagnosed with Miller Fisher syndrome

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Anonymous
  • April 15, 2007
  • 02:08 PM

Hello I am writing to ask for help.
My dad unforfunately is in hospital for an acute form of Miller Fisher syndrome.(All started February 27th.Within 24 hrs he became completely paralyzed with severe respiratory failure.) He was placed a trach that's why he is in the intensive care unit. He was performed two cycles of intravenous immunoglobulin and after that two cycles of plasmapheresis (they needed to try everything to help him).
Unluckly after these treatments there are not any impressive improvements apart from small movements of his head, the lower part of the jawbone and fingers. Doctors say that dad needs a long time to recover from it stressing that he is 67 with diabetes, cardiocirculatory and kidney problems. We are also worried of the thousand infections he can get in that hospital unit.
I asked them if they are repeating any further cycle of intravenous immunoglobulin or doing something else but they replied everything has been done. We just need to wait. What do you think? I wonder if there is any treatment to re-form myelina quickly. What about Benfotiamine? Do you think that a steady neurologist check can be helpful?

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8 Replies:

  • good luck, i wish him a recovery, i will pray for him, take opinions from several doctors. dont give up
    Anonymous 42789 Replies Flag this Response
  • Hello I am writing to ask for help.My dad unforfunately is in hospital for an acute form of Miller Fisher syndrome.(All started February 27th.Within 24 hrs he became completely paralyzed with severe respiratory failure.) He was placed a trach that's why he is in the intensive care unit. He was performed two cycles of intravenous immunoglobulin and after that two cycles of plasmapheresis (they needed to try everything to help him). Unluckly after these treatments there are not any impressive improvements apart from small movements of his head, the lower part of the jawbone and fingers. Doctors say that dad needs a long time to recover from it stressing that he is 67 with diabetes, cardiocirculatory and kidney problems. We are also worried of the thousand infections he can get in that hospital unit.I asked them if they are repeating any further cycle of intravenous immunoglobulin or doing something else but they replied everything has been done. We just need to wait. What do you think? I wonder if there is any treatment to re-form myelina quickly. What about Benfotiamine? Do you think that a steady neurologist check can be helpful?I am also 67 and have been diagnosed wiith MFS on 3-10-2008. Fortunately, my condition is not that bad, except I have continuous tingling, loss of feeling and pain in my hands and arms. I am fully mobile but not to the extent prior to 3-10-08. I alsao had 5 days Polygam IVG and was then sent home. I personally believe that neurologists can only be of help up to the point of discharge, after it's up to us all to share our problems, medications and what we're doing about it. Do you agree/
    Anonymous 42789 Replies
    • November 13, 2008
    • 09:57 AM
    • 0
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  • I am also 67 and have been diagnosed wiith MFS on 3-10-2008. Fortunately, my condition is not that bad, except I have continuous tingling, loss of feeling and pain in my hands and arms. I am fully mobile but not to the extent prior to 3-10-08. I alsao had 5 days Polygam IVG and was then sent home. I personally believe that neurologists can only be of help up to the point of discharge, after it's up to us all to share our problems, medications and what we're doing about it. Do you agree/I am 53 had only 3 days of IVG within 2 weeks I got my single vision back as well as my coordination. 3 months later I have to take naps every day and the double vision is back. They have had me back a couple of times for 3 hour IVG treatments but I don,t see any improvment. I find it interesting that most cases I have read about had a 5 day treatment whereas I only had 3.
    Anonymous 42789 Replies
    • October 15, 2010
    • 11:50 PM
    • 0
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  • im 30 yrs old and completly healthy male.Going to gym 4-5 times aweek and jus got home from hospital.diagnosed with the Miller Fischer syn. also got 5 days of the plasma blood therapy. i started with the double vision 1 day then next day couldnt talk or stand.Altho am home still have dble vision but am up walking around on own but not so steady.It was very scary but Dr. told me i will have 100% recovery. Dont undrestand why this happens guess the Dr.s dont either
    Anonymous 42789 Replies
    • January 28, 2011
    • 11:10 PM
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  • I am 30 yr old healthy male going to gym 4-5 x's a week that just got home from hospital with Miller Fisher syn.Was in for 9-12 days and got 5 days of blood treatment.Although am feeling better and double vision is going away, i don't understand how i came down this disease.
    Anonymous 42789 Replies
    • February 4, 2011
    • 04:10 PM
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  • Yea my 49 yeear old dad got it. It's day 3 and they are about to sart that treatment. He is on a trach and cant really talk, walk, and has double vision. They have to sedate him while he is on the trach. Very scary stuff.
    Anonymous 42789 Replies Flag this Response
  • Hello I am writing to ask for help.My dad unforfunately is in hospital for an acute form of Miller Fisher syndrome.(All started February 27th.Within 24 hrs he became completely paralyzed with severe respiratory failure.) He was placed a trach that's why he is in the intensive care unit. He was performed two cycles of intravenous immunoglobulin and after that two cycles of plasmapheresis (they needed to try everything to help him). Unluckly after these treatments there are not any impressive improvements apart from small movements of his head, the lower part of the jawbone and fingers. Doctors say that dad needs a long time to recover from it stressing that he is 67 with diabetes, cardiocirculatory and kidney problems. We are also worried of the thousand infections he can get in that hospital unit.I asked them if they are repeating any further cycle of intravenous immunoglobulin or doing something else but they replied everything has been done. We just need to wait. What do you think? I wonder if there is any treatment to re-form myelina quickly. What about Benfotiamine? Do you think that a steady neurologist check can be helpful?I have this disease also last Month May 2011. at first I experience double vision and dizziness so I decided to go to hospital last April 30, 2011 and been there for 9 days. I didn't undergo any medications because I refused to. Not only its very expensive but it will not going to change the fact that I will still have to carry my double vision thing for a couple of months. My aunt who is a doctor suggested that I take food supplements, and I did! After 1 week in the hospital no new symptoms occur so doctor decided to take me home without any treatment that she advise. After only 1.5months I can work again on my computer(btw Im a programmer) and my sensitivity to light is gone also. Those supplements became my primary medicine instead of taking drugs. Because we all know that drugs will have side effects. If you want to know on how I manage to overcome this disease without undergoing to medical treatment, Please go here: www.symmetrydirect.com/M6Y9K5E3 I will be willing to help you guys and you'll save a lot of money because you might not need the treatment anymore.
    Anonymous 42789 Replies Flag this Response
  • I had mfs twice 15 years apart....am considered a repeated sufferer of mfs now..... soo scared of it returning as there seems no pattern to what caused the relapse in the first place....worried about residual side effects.... my eyes are so sensitive to light... and I tire easily with massive headaches .
    Anonymous 1 Replies Flag this Response
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