Miller Fisher

    • Anonymous
      November 8, 2011 at 7:05 am

      I am 8 years out from a severe case of Miller Fisher. Still, I sometimes just crash, especially in the afternoon. Fever, headaches and fatigue. Please give me feedback.

      Charlie Sals

    • Anonymous
      December 26, 2011 at 12:20 pm

      Hi, Charlie,

      My Miller Fisher episode began in March of 2000, and I’ve always had residual fatigue since. This is not untypical, from what I’ve learned, almost like post traumatic syndrome to your neuro muscular system. My MF hit my vestibular/ocular nerves first and, to this day, I still have dizziness, peripheral vision issues, and fatigue. Every afternoon, around 3:00, I simply have to lay down for a while and “reboot.” Afterwards, I’m fine. I’m not sure if the energy levels I had prior to 2000 will ever be the same, but I’m thankful for what I do have. The slower pace has helped me live more in the present moment, and I find I’m a bit more contemplative than I was before GBS which, for me, has been a good thing!

      Be sure you’re getting ample daily Vitamin B, one of your nerve’s key sources for sustaining normal energy levels.

      Hope this helps, let us know how you’re doing,
      Norm

Miller-Fisher

    • Anonymous
      October 3, 2006 at 11:49 am

      I got Miller-Fisher in March 2006 – my protein count was 93 (spinal tap) – I had double vision, paralization on my left side of my body and numbness of my face and mouth (teeth and tongue) for 3 months – I still have the numbness on my face – teeth are still numb and tongue burns (still have problems eating). I also feel like I have electric shock from my shoulders up to the top of my head (It gets worse when I am tired). It has now been 7 months. My immunue system (enlarge red blook cells and no Folic Acid) is still out of range from the blood work I have had done.
      I would like to have some feedback from other Miller-Fisher patients and what their recover time was.
      Thank You,
      Sally Sobieralski
      Tampa, FL

    • Anonymous
      October 3, 2006 at 2:20 pm

      Sally,

      Sometimes this category isnt looked at as much as the GBS Adult one is, you may get more answers if you posted this in that category.

    • Anonymous
      October 3, 2006 at 2:37 pm

      [QUOTE=ali]Sally,

      Sometimes this category isnt looked at as much as the GBS Adult one is, you may get more answers if you posted this in that category.[/QUOTE]

      Even though I had a clear case of Miller-Fisher and not GBS.

    • Anonymous
      October 3, 2006 at 4:06 pm

      Sally,

      I had to look up on the web just to make sure I wasnt making a mistake, but this was my understanding of Millar Fisher. My understanding is that Miller Fisher is a varient of GBS, and there are many of our members who had MF and they all post on the GBS Adult. I had always wondered if I could possibly have had the varient because I had facial involvement too, not sure if in ’85 they had all the varients mapped out as they do now.

      Below is just one of the sites if visited that explained it so I could understand.
      [QUOTE]Miller Fisher syndrome is a rare, acute polyneuropathy characterized by ataxia (abnormal muscle coordination), ophthalmoplegia (paralysis of the eye muscles), and areflexia (absence of the reflexes). The disorder is a variant of Guillain-Barre syndrome. Symptoms may be preceded by a viral illness and include generalized muscle weakness and respiratory failure as in Guillain-Barre syndrome.[/QUOTE]

    • Anonymous
      October 3, 2006 at 4:42 pm

      Sally —

      Onset for my Miller Fisher was May 05. I was very fit and healthy 50-something guy.

      Had a long persistent cold. About 3 weeks into it I noticed intense tingling in my mouth eating ice cream that went away quickly when I stopped. No biggie. Then hand and feet went intermittently tingly. Then I got very dizzy and disoriented. Felt like I was drunk. All of this over a span of about 24 hours. Just thought it was part of the cold. Then, about 48 hours after I first noticed the tingling mouth I awoke with profound double vision, droopy face and a total shutdown of all oral functions (eating, speaking, brushing teeth, kissing, swallowing saliva, everything). Knew immediately it wasn’t part of the cold. Though it was a stroke and went straight to ER.

      The ER ruled out stroke, MS, Bells palsy, brain tumor, and dozen other things but was otherwise clueless. By then I was in freefall. One system after another was shutting down and I thought I was going do die. Right then and there. They shipped me off to a top flight regional neuro center nearby (if you have to have this disease, Milwaukee is the place to have it), and they immediately diagnosed it. Did the spinal tap, MRI and EMG to make sure, but they knew from the get-go.

      Started 5 days of IVIG next day, 72 hours after first symptom. Was in ICU for a week until they were sure the MF wouldn’t spread to my heart/lungs. Then they said there was nothing more they could do and sent me home for time to take its course.

      Two weeks after going home my feeding tube came out. Two months after that my speech, vision and stamina improved enough so I could go to work (office work). A month after that was able to work full time. Four months later (about 8 months after onset) could see well enough to drive. By that time I considered my self mostly better with just a few lingering residuals. Felt fine and had resumed vigorous normal activities, but I still had oral problems and my face was a Holloween mask.

      Little change in those lingering residuals today, about 9 months later and 17 after onset. So I have started seeing a physical therapist. I get an hour of electric stimulation on my face twice a week. Don’t see much improvement, but wife and therapist say the do.

      So a precipitous plunge at the front end, recovery of most of the lost ground over the first several months, and a long slow struggle to get the rest of the way back with no realistic end in sight yet. Not very serious stuff compared to what most people on this site have gone through but the biggest, baddest, scariest thing that has ever happened to me.

      That’s my story.

    • Anonymous
      October 3, 2006 at 5:26 pm

      [QUOTE=ali]Sally,

      I had to look up on the web just to make sure I wasnt making a mistake, but this was my understanding of Millar Fisher. My understanding is that Miller Fisher is a varient of GBS, and there are many of our members who had MF and they all post on the GBS Adult. I had always wondered if I could possibly have had the varient because I had facial involvement too, not sure if in ’85 they had all the varients mapped out as they do now.

      Below is just one of the sites if visited that explained it so I could understand.[/QUOTE]

      Thank you for taking the time to respond to me. I will post my Miller Fisher on GBS as well – I had a cousin that had GBS about 10 years ago – strange wonder if is genetic.

    • Anonymous
      October 4, 2006 at 1:31 am

      I got GBS / Miller Fisher variant in July 06. I too deteriorated rapidly. I woke up with double vision and tingling in my hands and then my voice went funny. I too thought i was having a stoke and went to the local ER. I had a referral to a neurologist in another town the next day but by the morning was unable to walk and had to go by ambulance. the neurologist diagnosed GBS immediately. I had a spinal tap to confirm it but the results didnt come back for a week and by then i had been in a coma for 5 days, ventilated and had 5 days of ivig … i’m glad they didnt wait for confirmation as i was totally paralysed within 48 hrs of onset.

      I spent 4 weeks in ICU (first 2 weeks on a ventilator)and another 10 days on the medical ward while i waited to get my trachy out due to a infection. A couple of days after leaving ICU i was able to stand and walk with a frame. By the time i left that hospital i could take a few steps unaided. I then got transferred back to my local hospital for physio and OT. I spent another 10 days there by which time i could walk pretty well unaided and was able to do the physios obstacle course. I spent 7 weeks in hospital altogether and walked out under my own steam and without any further therapy required.

      When i left hospital I still had double vision and some drooping on the right side of my face but barely noticable. I was expecting the double vision to take months to come right but a week later it miraculously came good and i was able to drive again. It is now about 10 weeks since i was struck down so sudddenly and to look at me you would have no idea that i was in a coma on life support and totally paralysed (apart from my trachy scar which is a beauty!) The only ongoing problem i have is fatigue. I have to have a “nana nap” most days and at night i get aa dull ache in my feet but nothing so bad that would require medication.

      Hope this helps … please feel free to message me if you want to chat.

    • Anonymous
      October 4, 2006 at 9:29 am

      It’s spooky to hear other Miller Fisher guys tell their stories. They are all the same. Certainly there are differences as to degree and severity, but we all go through the same progressions in more or less the same sequence. And the one thing that we all seem to have in common is that the bottom falls out at the front end. The breath-taking speed with which it overwhelms us seems to leave all of us wondering if we’ll see the next day. On the other hand, we seem to have a better, quicker recovery rate than straight GBSers.

    • Anonymous
      October 4, 2006 at 10:08 am

      Sally, sorry to hear about your Miller Fisher; usually the prognosis is good. I am concerned about your big red cells (that is a mean corpuscular volume MCV well above 100.) Folic acid deficiency is a well recognoised cause of this as is B12 deficiency which cases subacute combined degeneration of the spinal cord. There is no relation between this and MF or GBS. It is easily treated with folic acid. DocDavid

    • Anonymous
      October 4, 2006 at 10:18 am

      DocDavid,

      Just a quick question, off topic. Do you know if the varient Miller Fisher would have been ‘known’ (for lack of me finding a better word) in 1985?

    • Anonymous
      October 5, 2006 at 1:10 pm

      Ali,
      My GBS was diagonised in 1978 with Miller Fisher. So it was being diagnosed then. My eyes were the first symptoms and the last major symptom to come back. It did take them awile to even diagnose the GBS with MF but after ruling other things out they were sure what it was.
      I still feel the residual from the all of it. My left eye will sag some when I am tried and/or have a headache (which is all the time)
      I having 4 MRIs done next week along with new EMG tests.

    • Anonymous
      October 5, 2006 at 5:44 pm

      [QUOTE=Mike]Sally —

      Onset for my Miller Fisher was May 05. I was very fit and healthy 50-something guy.

      Had a long persistent cold. About 3 weeks into it I noticed intense tingling in my mouth eating ice cream that went away quickly when I stopped. No biggie. Then hand and feet went intermittently tingly. Then I got very dizzy and disoriented. Felt like I was drunk. All of this over a span of about 24 hours. Just thought it was part of the cold. Then, about 48 hours after I first noticed the tingling mouth I awoke with profound double vision, droopy face and a total shutdown of all oral functions (eating, speaking, brushing teeth, kissing, swallowing saliva, everything). Knew immediately it wasn’t part of the cold. Though it was a stroke and went straight to ER.

      The ER ruled out stroke, MS, Bells palsy, brain tumor, and dozen other things but was otherwise clueless. By then I was in freefall. One system after another was shutting down and I thought I was going do die. Right then and there. They shipped me off to a top flight regional neuro center nearby (if you have to have this disease, Milwaukee is the place to have it), and they immediately diagnosed it. Did the spinal tap, MRI and EMG to make sure, but they knew from the get-go.

      Started 5 days of IVIG next day, 72 hours after first symptom. Was in ICU for a week until they were sure the MF wouldn’t spread to my heart/lungs. Then they said there was nothing more they could do and sent me home for time to take its course.

      Two weeks after going home my feeding tube came out. Two months after that my speech, vision and stamina improved enough so I could go to work (office work). A month after that was able to work full time. Four months later (about 8 months after onset) could see well enough to drive. By that time I considered my self mostly better with just a few lingering residuals. Felt fine and had resumed vigorous normal activities, but I still had oral problems and my face was a Holloween mask.

      Little change in those lingering residuals today, about 9 months later and 17 after onset. So I have started seeing a physical therapist. I get an hour of electric stimulation on my face twice a week. Don’t see much improvement, but wife and therapist say the do.

      So a precipitous plunge at the front end, recovery of most of the lost ground over the first several months, and a long slow struggle to get the rest of the way back with no realistic end in sight yet. Not very serious stuff compared to what most people on this site have gone through but the biggest, baddest, scariest thing that has ever happened to me.

      That’s my story.[/QUOTE]
      Mike – thanks for your response. By the way I am 59 and thought I was in great physical shape as well. I went to a physical therapist as well for my face they tried the electric simulation on me but I could not feel anything – so they tried a thing called a Time Machine and got more response from my muscles with that – you can actually purchase them – which I did – but went back to work and have not had time to use it. I have put in for sick leave because I feel I am sliding backwards instead of forward – I am in mortgage sales and too much pressure – I have been totally stressed out. Hopefully just hanging out and doing some mild exercise, meditation will get me back.

    • Anonymous
      October 5, 2006 at 5:51 pm

      [QUOTE=montanasmum]I got GBS / Miller Fisher variant in July 06. I too deteriorated rapidly. I woke up with double vision and tingling in my hands and then my voice went funny. I too thought i was having a stoke and went to the local ER. I had a referral to a neurologist in another town the next day but by the morning was unable to walk and had to go by ambulance. the neurologist diagnosed GBS immediately. I had a spinal tap to confirm it but the results didnt come back for a week and by then i had been in a coma for 5 days, ventilated and had 5 days of ivig … i’m glad they didnt wait for confirmation as i was totally paralysed within 48 hrs of onset.

      I spent 4 weeks in ICU (first 2 weeks on a ventilator)and another 10 days on the medical ward while i waited to get my trachy out due to a infection. A couple of days after leaving ICU i was able to stand and walk with a frame. By the time i left that hospital i could take a few steps unaided. I then got transferred back to my local hospital for physio and OT. I spent another 10 days there by which time i could walk pretty well unaided and was able to do the physios obstacle course. I spent 7 weeks in hospital altogether and walked out under my own steam and without any further therapy required.

      When i left hospital I still had double vision and some drooping on the right side of my face but barely noticable. I was expecting the double vision to take months to come right but a week later it miraculously came good and i was able to drive again. It is now about 10 weeks since i was struck down so sudddenly and to look at me you would have no idea that i was in a coma on life support and totally paralysed (apart from my trachy scar which is a beauty!) The only ongoing problem i have is fatigue. I have to have a “nana nap” most days and at night i get aa dull ache in my feet but nothing so bad that would require medication.

      Hope this helps … please feel free to message me if you want to chat.[/QUOTE]

      I agree with you I could nap all day. I went back to work after 4 months and just turned in sick leave – I am just too tired to work – I am in sales and lots of pressure. I sounds to me like you got the GBS as well as Miller Fisher because of your feet – although my feet were dumb and tingling at the onset.
      thanks for your response.

    • Anonymous
      October 5, 2006 at 6:07 pm

      Hi Sally,

      I was told I had GBS with the MF varient. The last thing to return to normal was my eye muscle control. I was seeing double months after everything else came back. The important thing is, it did come back!! Good luck. I did go to my opthamologist for a change in my glasses Rx. That helped to relieve the eye strain, made me more comfortable, and I’m sure helped with my overall recovery.

      vmac

    • Anonymous
      October 6, 2006 at 1:01 am

      [QUOTE]sounds to me like you got the GBS as well as Miller Fisher because of your feet[/QUOTE]

      yes i had GBS with Miller Fisher variant – if you are going to get GBS you may as well go the whole hog!

      vmac my eyes were the first to go and the last to come back too – but they do come back dont they, tahat was really freaking me out that i would have double vision forever until i read a post on here that they came back overnight. I only had to wait a week after leaving hospital so was able to drive quite soon.

    • Anonymous
      October 6, 2006 at 8:56 am

      babe,

      We do seem to have a lot in common. Over 20 years post, and pretty much the same experience. My left eye is the weak one as well.

    • Anonymous
      October 6, 2006 at 11:52 am

      It seems the one thing common to all MFers is double vision, but I find that term thoroughly inadequate in describing just how profoundly debilitating the condition is. To me, double vision means watching a distant TV station on a stormy night and seeing the main picture with a ghost just beside it. If that’s all we had, we could rightfully be accused of being a bunch of whiners. What we had was much much worse. I call it kaleidoscopic vision instead of double vision, but even that term falls far short of describing the condition.

      I had two totally separate and distinct images showing up simultaneously on the projection screen in my brain, not a ghost-like overlapping but two separate pictures of about 30 degrees apart. My brain had lost the ability to resolve the separate vision from each eye into a single image, so it didn’t even try and instead showed both of them side-by side. Each image randomly moved around on the projection screen, entirely independent of the other. Up, down, sideways, back and forth. And if the object I was looking at was istelf moving, the combination of its movement and the random motions that my condition was creating made me literally sick to my stomach. I had to wear a hood over my eyes when riding in a car, and I never went anywhere without my vomit basin (isn’t it fun to vomit with an NG feeding tube in place?).

      To make matters worse, my eyes were locked in place with the left one turned in so that its line of vision crossed over the right eye’s line of vision. The upshot of that was that objects straight ahead were seen with my right eye and projected on the right side of the screen while objects off to my right were seen with my left eye and projected on the left side of the screen.

      All of this lasted for a good 4-5 months and then very gradually got back to normal over several more months. During the worst of it, a pirate’s patch helped. I could cover one eye for half an hour and then switch to the other side for half an hour.

      That’s kaleidoscopic vision.

    • Anonymous
      October 9, 2006 at 8:45 pm

      [QUOTE=Mike]It seems the one thing common to all MFers is double vision, but I find that term thoroughly inadequate in describing just how profoundly debilitating the condition is. To me, double vision means watching a distant TV station on a stormy night and seeing the main picture with a ghost just beside it. If that’s all we had, we could rightfully be accused of being a bunch of whiners. What we had was much much worse. I call it kaleidoscopic vision instead of double vision, but even that term falls far short of describing the condition.

      I had two totally separate and distinct images showing up simultaneously on the projection screen in my brain, not a ghost-like overlapping but two separate pictures of about 30 degrees apart. My brain had lost the ability to resolve the separate vision from each eye into a single image, so it didn’t even try and instead showed both of them side-by side. Each image randomly moved around on the projection screen, entirely independent of the other. Up, down, sideways, back and forth. And if the object I was looking at was istelf moving, the combination of its movement and the random motions that my condition was creating made me literally sick to my stomach. I had to wear a hood over my eyes when riding in a car, and I never went anywhere without my vomit basin (isn’t it fun to vomit with an NG feeding tube in place?).

      To make matters worse, my eyes were locked in place with the left one turned in so that its line of vision crossed over the right eye’s line of vision. The upshot of that was that objects straight ahead were seen with my right eye and projected on the right side of the screen while objects off to my right were seen with my left eye and projected on the left side of the screen.

      All of this lasted for a good 4-5 months and then very gradually got back to normal over several more months. During the worst of it, a pirate’s patch helped. I could cover one eye for half an hour and then switch to the other side for half an hour.

      That’s kaleidoscopic vision.[/QUOTE]

      I totally agree with you with the double vision – it definitley was not a ghost thing. Two separate pictures every where. After 7 months when I get tired I get the double vision and still have it if I look side ways.
      Sally

    • Anonymous
      October 11, 2006 at 9:33 am

      What is a EMG test?

    • Anonymous
      October 11, 2006 at 9:44 am

      An EMG test is where they stick needles into various parts of the body, send a small electrical current through the needle and measure the time it takes for the electrical signal to go to the end of your muscles and return to the needle. It can help tell how much damage has been done to the nerves in various areas of the body. The doctors can also hear the difference in the signal when the nerves are working properly vs. when they are damaged.

      I was told for normal people it is not supposed to be painful. For me it was excruicatingly painful. 🙁

    • Anonymous
      October 11, 2006 at 10:18 am

      as kathryn says, the emg checks if the muscles work by sending electrical impules via needles stuck in you in lieu of the nerves telling the muscles to do something. the ncv part of the emg checks the nerves. it is done by placing pads on your skin. once gbs is Dxed only the ncv need be done in the future if necessary. both are not fun to have. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 11, 2006 at 10:18 am

      Sally —

      An EMG test uses electric current to measure the efficiency of your nerves in carrying messages to and from your muscles and how efficiently your muscles process the messages. It’s very basic to the diagnosis of GBS and MF. Surprised you haven’t had one.

      Sorry to tell you this if you’ve been told by your doctor that you now should have one, but you need to know what the docs try to avoid saying. They’ll sugar coat it by saying things like “Some patients occasionally do experience some minor discomfort…”. In fact, it is a remarkably unpleasant procedure. That’s not to say you shouldn’t have the test, because it can be very important. And I don’t want to scare you out of it, but you need to be prepared.

      The technician will stick a dozen or so long needles into your extremities. This in itself is not particularly painful. The needles are so thin and sharp that all you feel is the initial *****. They look like accupunture needles, but they’re actually electrical sensors that are connected to a computer. Then he’ll take an electrically charged wand and tap you with it. The computer will measure how long it takes the juice to reach each of the sensors and how much it dissipates by the time it gets to each of them. The docs can read that information make assessments as to how well your telegraph system is working.

      Here’s the catch. It’s not a single tap with the wand. It can be 30, 40, 50 separate zaps. Some have a mild charge, some are more aggressive. Some quick, some prolonged. Some jolts are solo, some are in rapid succession. The cumulative effect is what wears you down.

      If by now you are imagining old black and white Frankenstein movies with megavoltage running through the monster while he’s lying on the table, it’s nothing like that. You’ll have no problem getting through it, but you’ll be glad when it’s over. At least you’ll have a war story to tell others.

      Mike

    • Anonymous
      October 11, 2006 at 4:46 pm

      [QUOTE=gene]as kathryn says, the emg checks if the muscles work by sending electrical impules via needles stuck in you in lieu of the nerves telling the muscles to do something. the ncv part of the emg checks the nerves. it is done by placing pads on your skin. once gbs is Dxed only the ncv need be done in the future if necessary. both are not fun to have. take care. be well.

      gene gbs 8-99
      in numbers there is strength[/QUOTE]
      Gene – thanks – now I remember it well while I was in the hospital –
      thanks,
      Sally

    • Anonymous
      October 11, 2006 at 4:52 pm

      [QUOTE=Mike]Sally —

      An EMG test uses electric current to measure the efficiency of your nerves in carrying messages to and from your muscles and how efficiently your muscles process the messages. It’s very basic to the diagnosis of GBS and MF. Surprised you haven’t had one.

      Sorry to tell you this if you’ve been told by your doctor that you now should have one, but you need to know what the docs try to avoid saying. They’ll sugar coat it by saying things like “Some patients occasionally do experience some minor discomfort…”. In fact, it is a remarkably unpleasant procedure. That’s not to say you shouldn’t have the test, because it can be very important. And I don’t want to scare you out of it, but you need to be prepared.

      The technician will stick a dozen or so long needles into your extremities. This in itself is not particularly painful. The needles are so thin and sharp that all you feel is the initial *****. They look like accupunture needles, but they’re actually electrical sensors that are connected to a computer. Then he’ll take an electrically charged wand and tap you with it. The computer will measure how long it takes the juice to reach each of the sensors and how much it dissipates by the time it gets to each of them. The docs can read that information make assessments as to how well your telegraph system is working.

      Here’s the catch. It’s not a single tap with the wand. It can be 30, 40, 50 separate zaps. Some have a mild charge, some are more aggressive. Some quick, some prolonged. Some jolts are solo, some are in rapid succession. The cumulative effect is what wears you down.

      If by now you are imagining old black and white Frankenstein movies with megavoltage running through the monster while he’s lying on the table, it’s nothing like that. You’ll have no problem getting through it, but you’ll be glad when it’s over. At least you’ll have a war story to tell others.

      Mike[/QUOTE]
      Mike – now I remember – I was like mush brain in the hospital and definitley remember this being done – just did not know the name – and yes it was very, very uncomfortable – keep on swearing at them to put me under or give me some pain killers first – obviously they did not pay attention to me – my only saving grace was I already had a port put into my chest so they had to stop there and above.
      Thanks,
      Sally

    • Anonymous
      October 16, 2006 at 11:18 am

      I had the EMG done last week and it was no fun. Doctor said I had carpal tunnel in both hands and of course confirmed (again) that I had no reflexes in the knees or ankles.
      Ali, it does seem that we have similiar problems. Do you have headaches most of the time? I wake up with them and it varies as to how severe they get during the day.

    • Anonymous
      October 26, 2006 at 12:50 pm

      [QUOTE=Mike]
      I had two totally separate and distinct images showing up simultaneously on the projection screen in my brain, not a ghost-like overlapping but two separate pictures of about 30 degrees apart. My brain had lost the ability to resolve the separate vision from each eye into a single image, so it didn’t even try and instead showed both of them side-by side. Each image randomly moved around on the projection screen, entirely independent of the other. Up, down, sideways, back and forth. And if the object I was looking at was istelf moving, the combination of its movement and the random motions that my condition was creating made me literally sick to my stomach.

      That’s kaleidoscopic vision.[/QUOTE]

      Mike – I remember the nausea from the double vision and I left the hospital with my left eye locked in place looking at my nose. I wore an eyepatch until it moved more centrally. I still have double vision in my peripheral. As well as other residual symptoms. I was a GBS and Miller Fisher. Thankfully the progression was stopped before they met in the middle. From me first noticing the double vision it seemed my symptoms just kept progressing every hour adding something new to the mix.
      Michelle

    • Anonymous
      October 26, 2006 at 6:57 pm

      Michelle —

      I think it’s the cascading of symptoms at the front end that makes the experience so scary. You feel like you’re in free-fall with one system after another shutting down. And when the ER docs, who most likely never saw the syndrome before, are as bewildered as you are and start panicking themselves, that just feeds into your fear.

    • Anonymous
      November 1, 2006 at 1:58 am

      I have been diagnosed with miller fisher syndrome. my question is did anyone else have extreme pain in thier face and what were they able to do about it.
      thanks, christine

    • Anonymous
      November 1, 2006 at 8:46 am

      hi christine & welcome,

      excruciating pain & gbs can go hand-in-hand. many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorbtion max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. most of our pains are via the spinal nerves, so i hope someone who has facial pain will post here. both are part of the peripheral nervous system. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 2, 2006 at 3:04 am

      Thank you Gene i am on neurontin and its seems to do great for the nerve pain in my arms and legs it just doesnt seem to do the trick for my face. It feels like steel hammers are pounding my skull anytime someone touches my face, its very painful. Im currently on 300mg 3x a day. I have only been on them for a couple of weeks. Do you think I should talk to my neurologist about taking more? Thank you again, Christine

    • Anonymous
      November 2, 2006 at 8:04 am

      christine,

      yes, you could up your amount of neurontin taken. i also have mf gbs & it seemed to me that not a lot helped my face which felt as though someone was tearing off the skin. i now remember that on my own i tried 10 mg of prednisone for a few weeks. i thought it did a little to help even though prednisone is supposed to be counterproductive to gbs. heck, maybe it did hinder the rest of my gbs recovery. take care. be well. gene

    • Anonymous
      November 6, 2006 at 8:00 pm

      [QUOTE=youngerfamily]I have been diagnosed with miller fisher syndrome. my question is did anyone else have extreme pain in thier face and what were they able to do about it.
      thanks, christine[/QUOTE]
      Christen – I have been dxd – with MF only – I apologize if I have already answered this emailed – my computer is acting up – YES my face is the worst with pain – tongue, teeth, and 3/4 of my whole face iss numb (but in pain if that makes any since) , when I am tired my neck, back, arms and chest are uncomfortablbe – I was lst dxd in 3/06 and do not seem to be any better. My protien count was 93 – from my understanding it is when you were able to receive the IVG from the recover time.

      Sally