Limits of Miller Fisher Variant

    • Anonymous
      June 12, 2006 at 2:32 pm

      Dear Friends:

      I am rather curious as to whether there are sharp boundaries between MF and regular GBS. Is MF just at the extreme edge of a spectrum of symptoms? I am asking because I know of several people who had GBS and it affected them in the face and other parts of the body but were always able to wiggle their toes. Is there a difference in the mechanisms of GBS and MF other than where the most apparent damage occurs?

      I have asked a neurologist these questions and he didn’t give a definitive answer. He sort of alluded to the fact that there isn’t a sharp distinction between MF and GBS, just a matter of degree. He didn’t seem to sure of himself so I wonder if any of you have thoughts to add to this.

      Lee

    • Anonymous
      June 12, 2006 at 3:06 pm

      hi lee,

      i believe that the mf varient of gbs requires that the cranial nerves be involved. i say this w confidence but w/o authority – lol. i was effected from from tiptop of my scalp down to my extreme toe edges. take care. be well.

      gene gbs 8-99
      in numbers there is strength

      • February 5, 2017 at 1:52 pm

        MFS and GBS are similar in that they are autoimmune disorders where various antibodies attack the nervious system. The diagnostic criteria for MFS is the presence of elevated IgG anti‐GQ1b antibodies. The only bad part is that the test for this antibody takes about 2 weeks to come back, so they typically begin treatment without knowing for sure.

        Your Dr is correct in that the mechanisms and how theymay be related are not known

    • Anonymous
      June 12, 2006 at 4:50 pm

      Lee —

      Can’t be specific about the line of distinction between GBS and MF, as I’ve only had MF. Further, though my docs were really outstanding (as I read the doctor horror stories in so many of the posts I give thanks for my good fortune), they never talked about the distinction except to say that one presents bottom up and the other presents top down. I suspect it’s more than simply the hierarchy of presentation, but I don’t know the physiology. Let me at least tell you how my MF progressed, and maybe that will help get to your point.

      I’m 13 months into the adventure. I was returning to the US from a couple weeks in Europe where I had been sick the whole time with a persistent cold. I ate some ice cream on the plane home and experienced unpleasantly intense tingling in my whole mouth that lasted only as long as I was eating the ice cream. In retrospect, that was my first indentifiable MF symptom, though at the time I thought it was just part of the cold. That night at home, more ice cream, same reaction. Next morning at breakfast I had mild tingling in toes of one foot. Just figured my foot had fallen asleep, but then the other toes got it, too. Very mild and over in about 5 minutes. Later at work that day same thing happened to my fingertips, this time symmetric in both hands. Again, over in 5 minutes. I was recognizing a pattern but still thought it was part of my cold. Next day, my second day back, while driving to work my fingers and toes acted up, briefly, mildly, but simultaneously. This time it was accompanied by dizziness that forced me to pull off the road. Once again it was over in 5 minutes, then I continued on to my office. At midday the dizziness returned like a ton of bricks. I felt drunk. The whole world was spinning, and this time it didn’t pass. Called my wife to come pick me up becasue I couldn’t drive. Got home, took a nap, and I seemed okay again. Next morning, about 72 hours after my first ice cream experience, the bottom fell out. I awoke with unsteadiness and profound double vision. And when I tried to tell my wife about it, my lips couldn’t form words.

      We went to the emergency room, where they were stumped. Ruled out stroke, MS, brain tumor. Thought it might be myesthenia gravis but only becasue they Googled my symptoms (seriously!) and that’s what they got. But they were sure, and so was I, that it wasn’t just the tail end of my cold. We have an outstanding regional neuro center in my community, and they sent me there. The neuros knew instantly what it was. They did the spinal tap, the MRI and the EMG just to prove it, but they knew.

      By the end of that day my double vision had become kaleidoscopic vision. My oral functions were non-existant. Couldn’t talk, eat, swallow my saliva, smile or brush my teeth. My whole face hung limp, as if I had Bells Palsey (which the ER guys had also ruled out). Systems were shutting down in rapid succession. I thought I was dying, despite the neuros’ assurances that I wasn’t. Still, aside from some wobbliness and minor tingling, the whole experience was from the shoulders up. And full facial paralysis was the only paralysis I ever had.

      Next day was in ICU in case the disease moved into my lungs, which was the next step for it. Also started IVIG for five days. Was sent home a few days after that (“sorry, there’s nothing more we can do for you”) and my body began the long, slow, glacial process of fixing itself. After 2 weeks the feeding tube came out. After 2 months I returned to work. After 6 months my visions straightened out enough to drive. After 13 months my mouth still doesn’t work. Can’t smile, can’t pronounce lip sounds (mainly “m”, “p” and “b”), still drool, still have food fall from my mouth while I eat. And that might be as good as my oral functions ever get. But otherwise I feel great. Am heathier, more fit and more active than I’ve been in years. It’s amazing how even a 55 year old body wants to fix itself once the IVIG has chased the bad guys away.

      That’s my journey to the edge of the cliff and back. Hope it sheds some light on your question.

      Best regards,
      Mike

    • Anonymous
      June 16, 2006 at 12:39 pm

      Hi Lee,
      There are a couple of us here on the boards who got hit with the “double whammy”, MFS and severe GBS at the same time. My head and my feet exhibited symptoms at the same exact time, so it wasn’t purely ascending for me at all. Then everything “met” over my middle and I had respiratory failure.
      Twelve cranial nerves, number I and II are part of the CNS so not involved in MFS or GBS, I got smacked hard in the other ten that are part of the PNS though, and experienced “up and down” double vision for the 1st 7 months after I was DX’d. I have permanent residual facial paralysis, and “body-wise” below the knees is worst of the rest of my body.

      This is interesting from the UK GBS group’s online pamphlet: (Link deleted by administration)

      [U][B]Can you tell me more about Miller Fisher syndrome? [/B][/U]

      “About 5% of GBS sufferers have Miller Fisher syndrome (MFS) which was described in 1956 by Dr Miller Fisher. He described patients with paralysis of the eye muscles, incoordination of the limbs and loss of tendon reflexes but no weakness in the arms or legs.”

      “Strictly speaking, that and only that, is MFS. The connection with GBS comes because some GBS patients have paralysed eye muscles too. [U]Consequently, MFS and GBS can overlap.” [/U]

      “[U]Recently, special antibodies have been found in patients with MFS and in patients with GBS with eye paralysis but not in other GBS patients. These antibodies may be the cause of the eye muscle paralysis[/U].”

      This is the link to their pamphlet on MFS: (Link deleted by administration)

      This is from that pamphlet:
      “Research in recent years has concentrated in identifying the antibodies that are thought to be responsible for GBS etc. [U]It has been confirmed clinically that MFS, GBS with ophthalmoplegia, BBE, and another condition called acute ophthalmoparesis* are closely related, forming a continuous range[/U]. This is supported by immunological findings with the antibody anti-GQ1b IgG being the common factor. [J Neurol Neurosurg Psychiatry 2001 Jan;70(1):50-55] This antibody is not found in other GBS patients so it is thought that it is responsible for the ophthalmoplegia.”

      best wishes,
      cg

    • Anonymous
      June 23, 2006 at 3:39 pm

      I will agree with the others I don’t know the boundaries between the two, while most of my symptoms were neck down, I did (still do) have feet involvement, I had and have weakness. I have the whole cranial nerve thing too with drooping eyelid and double vision. Interestingly enough my symptoms were far more severe on my left side than on my right, which is unusual as most of the literature states in happens on both side equally. I guess it was my turn to be extra special. LOL I was diagnosed GBS and Miller Fisher.

    • Anonymous
      July 4, 2006 at 12:29 am

      I may be missing something but i was told the reason what i had (Link deleted by administration)
      story#2]was miller fisher because mine started in the head ,my eyes to be exact and worked down!:rolleyes: I was uncousious in less than an hour so i dont know the exact track this terrible syndrome took on my body!but i was taken to a hospital quickly ,but they thought i was having a brain stem stroke!,,this doc practically gave up on me! luckily my dear sister lived in the area and she was there quickly and felt my fingers move when questions were asked of me! this is how i could communicate yhat i was still here in my mind anyway~! but i dont think anyone in that hosp e-mergency room knew what guillain barre’ syndrome” was or is!..i luckily had a cousin in the chicago area as radiologist that recognized my symptoms and had me taken to UNIVERSITY OF IOWA HOSPITAL AND CLINICS by helocopter that following night! thank GOD!

    • Anonymous
      July 4, 2006 at 7:46 am

      my mf varient of gbs started in the shoulders, jumped to my thighs, then i don’t remember cuz onset took so long & it was quite a while ago. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 21, 2006 at 3:08 pm

      Thank You Very Much!

    • Anonymous
      July 30, 2006 at 12:06 am

      I agree with Gene. My eyes were involved but so was every other part of my anatomy. I couldn’t move my toes or control my eyes.

    • Anonymous
      August 22, 2006 at 6:48 am

      It appears that I am luckier than most. I was totally paralyzed from the neck up. There was no paralysis below my neck but I was too weak to move without aid. I was diagnosed as “severe Miller-Fisher” but I recovered rather quickly. I could swallow a little within 3 months and my vision began to clear within 6 months or so. The cranial nerve that controls my tongue has not healed completely so my speech is a bit impaired and I have to chew food carefully. My onset was during the last week in March 2003 and I was in hospital on April 2, 2003.

    • Anonymous
      September 5, 2006 at 2:17 pm

      Hey Canukgirl,

      We’ve talked before. I read the literature that you told me about and I had an “ah-ha” moment! I was never formally diagnosed with Miller Fischer but now realize that I most certainly have every single symptom, including residual facial paralysis (mostly on the right). I have regular spasms that are not controlled with meds. I also have dealt with the lower extremeties weakness, mostly in my knees and ankles. I have occasional falls and have resulted in wearning only low or no heeled shoes to prevent damage due to a fall. This is all after 5 years of “recovery”. I can’t stand to look at myself in pictures anymore…..there is only a lopsided smirk left. KT

    • Anonymous
      September 5, 2006 at 10:34 pm

      Hi KT,

      I just got your message and I will be sending you a reply to it as soon as I finish this note off…..:)

      Yes, I was never formally diagnosed with Miller-Fisher overlap along with my GBS either, but for me if it looks like a duck and quacks like one, it probably is one……for myself my symptoms started in my feet [U]and [/U] my face at the same exact time. Wasn’t the “typical” ascending paralysis that is spoken about so much in the GBS literature. My feet went numb, and 1/2 my tongue went numb that same day also, like someone had drawn a line down the middle, but it soon progressed to full cranial nerve involvement, and eventually total paralysis and respiratory failure in under a weeks time. My residual facial paralysis is also more prominent on the right side of my face, but strangely from the neck down it is the left side of my body that is weaker.

      I will sign off now and get my reply to your message done,

      talk with you soon,

      CG πŸ™‚

    • Anonymous
      September 9, 2006 at 10:45 pm

      I also had MF variant of GBS – in 1993. I had rapid descending paralysis, from my head (also started with my eyes) to my toes. At my worse was completely paralyzed – vent and all – except for my toes, thoughout I could wiggle them!

      I was told as well, MF starts with the head area and progresses downward, traditional GBS usually starts in the extremeties and travels upward.

    • Anonymous
      September 15, 2006 at 11:02 am

      I too had mf with GBS. My was severe and it took awhile to diagnose but that was in 1978. My eyes were my first symptom. It began with them being irritated and then to double vision and finally to where they did not even move (eyes, eyelids etc). What was weird is that it was the last thing to come back but only on the left side of my face. The entire left side of my face was still paralyzed even after everything else “came back” It gradually recovered but I felt like I had been numbed by the dentist for months. I had to wear an eye patch on that eye. My eyes stiil tire easily and when I have a severe headache my left eye will droop some.

    • Anonymous
      October 3, 2006 at 5:32 pm

      [QUOTE=csauls]It appears that I am luckier than most. I was totally paralyzed from the neck up. There was no paralysis below my neck but I was too weak to move without aid. I was diagnosed as “severe Miller-Fisher” but I recovered rather quickly. I could swallow a little within 3 months and my vision began to clear within 6 months or so. The cranial nerve that controls my tongue has not healed completely so my speech is a bit impaired and I have to chew food carefully. My onset was during the last week in March 2003 and I was in hospital on April 2, 2003.[/QUOTE]

      Do you still have facial and teeth numbness? My tongue always feels like I burned it on a hot pizza (wish I could even it a pizza) have a hard time eating bread. Had MF in 3/06.
      Thanks,
      Sally

    • Anonymous
      October 3, 2006 at 5:35 pm

      [QUOTE=babeprice]I too had mf with GBS. My was severe and it took awhile to diagnose but that was in 1978. My eyes were my first symptom. It began with them being irritated and then to double vision and finally to where they did not even move (eyes, eyelids etc). What was weird is that it was the last thing to come back but only on the left side of my face. The entire left side of my face was still paralyzed even after everything else “came back” It gradually recovered but I felt like I had been numbed by the dentist for months. I had to wear an eye patch on that eye. My eyes stiil tire easily and when I have a severe headache my left eye will droop some.[/QUOTE]

      I had numbness on my left side as well – do you still have any symtoms with your tongue, face or teeth?
      Thanks,
      Sally

    • Anonymous
      October 17, 2006 at 8:46 am

      The main problem I have with my face is my left eye. I really don’t have any other problems. It seems like since my eyes were the first thing to go that they are the main residual that I have…at least on my face.

    • Anonymous
      October 17, 2006 at 10:17 am

      [QUOTE=csauls]It appears that I am luckier than most. I was totally paralyzed from the neck up. There was no paralysis below my neck but I was too weak to move without aid. I was diagnosed as “severe Miller-Fisher” but I recovered rather quickly. I could swallow a little within 3 months and my vision began to clear within 6 months or so. The cranial nerve that controls my tongue has not healed completely so my speech is a bit impaired and I have to chew food carefully. My onset was during the last week in March 2003 and I was in hospital on April 2, 2003.[/QUOTE]

      csauls – do you remember what your protien count was?
      Thanks,
      Sally

    • Anonymous
      November 2, 2006 at 3:26 am

      My miller fisher was strange. It started with numbness in my trunk which stared to move upwards to my breast and downwards towards my legs and then finally to my feet and my tounge. then the paralysis in my face happend. First on the right side, then the next day on the left. I had treatment two weeks ago (after being ran through all the tests of course emg, lb, mri ) and it seems to be working quickly. Im on neurontin and I have aweful facial pain but it helps with the nerve pain in my legs and arms. My onset seems to be strange compared to others but we usually end up in the same place. Thank you for all of the messages it helps to know youre not alone especially with something so rare. XOXO, Christine

    • Anonymous
      November 2, 2006 at 11:26 am

      I was told that Miller Fisher starts in the head and travels downward and GBS starts in the hands and feet and travels upward. I was trying to tell the doctors that my problems started years before with not double vision but that ghost shadow. Making phone and electrical wires look like a hanging network of double wires hanging one under the other. As I studied this problem I noticed the real wire was the darker image and I adapted. I noticed it got worse if I was on the computer and then would drive. Or if I would read and then drive. I just planned my day accordingly. Nothing was done about it at my regular eye exams. I did get reading glasses and just conntributed everything to old age. I can remember it back when I was 50 years old. Active lifestyle and traveling around from state to state on the weekends. Trying to quickly tell the Doctors this and them lip reading they come up with the Miller Fisher Variant. I am not sure that I agree with that but I also do not know the results of all the other tests. I never had the headaches that others have spoke about and I never had facial pain either.

      Here is where the time frame and memory give me the only guideline I can go by and I am not even sure if it is part of what happened. A few months before the onset of GBS/MFv I went to the eye Doctor for a routine visit and he noticed the opening to my Optic Nerve was swollen and told me to go to my family Doctor and he would send him a letter explaining what he seen. I was also noticing water weight and retension in my hands and my feet were swelling. The Doctor put me on a water pill and both of us did not even mention the letter that was never mailed from the eye Doctor. I was starting to feel much better and the Holidays were approaching and I was trying to get ready for my fall cleaning and felt tired. I could always come up with a reason for my fingers and toes falling asleep. I had my arm out the window of the car. I had my leg in a funny position. Maybe a week later it would come back or a few days later I would feel the tingling. I just ignored it. About a week before my onset I noticed the tissue around my eye ball was swollen and I had a heavy discharge in my eye the one morning. I was busy and I had it in the back of my mind if it continued I would go see the Doctor. The tissue seemed to stay the same and the discharge stopped. I was watching for Pink Eye. The dryness in my eye went away and I forgot about it for the weekend.

      Saturday was a busy schedule. Lunch with my Husbands Aunt and her family at a new resturant. I raked the yard after lunch and got tired and went in the house. Usually I would have finished the whole yard but figured it was because I was also doing Spring Cleaning in the Fall before the Holidays. I had almost all my Fall decorations up and was looking forward to the Holidays. Later that night I even went out and did grocery shopping. I had really had a busy day!

      Sunday I woke up with numb feet and hands and I clearly had double vision of two completely separate images. I also thought I had a stroke. Off to the ER where they said it was MS but would keep me for observation and tests.

      As my team of Doctors grew and my health started to decline they had also come up with I had GBS and our chat about what had happened with my eyes before this they said it was MF variant. Treatment would be the same so I calmed down and did not try to explain that the ghost vision was 5 years ago. Then we started to talk about any infections or illnesses I had. That only added to the mystery of this illness. I had been fairly healthy. Having a history of Sinus infections they figured that was the reason and it was too mild for me to call the Doctor. They also said it had to be an infections in the last 30 days. I had none that I could remember.

      Then I declined quickly with each day and was not able to walk from the bathroom to the bed. Then I felt weak while feeding myself. Swallowing was difficult and finally I was drinking and was not able to swallow the Ginger Ale in my cup. Step by Step I had to alert the Nurses to each problem as they occured. I was in ICU and then hit bottom. The IVIG was not working to stop the progression and I was transferred to a different hospital that could treat me with the Plasmaphresis Exchanges. Ventilators and complications with that, Colasped Lung and Trache and the first of them failed. I was on life support before I knew it with my eyes stuck wide open day and night for months. As quick as it started and 3 weeks in the ICU it started to reverse and each day I had “Brags” to share with the Aids, Nurses and Family members. I was now coming out of being totally paralized (except for my feet from the ankles down) Lucky for me I had set up “signals” with my feet.

      Rehab followed and I worked hard to get out of the hospital after 9 weeks I was home. Funny but like others a week later the double vision cleared enough so I could watch TV. Not being able to watch TV or read made those 9 weeks go very slow. While in the hospital I had asked for a Neuro Opthomolagist and continue to see him regular even now. He kept me calm and told me that my vision would get better. I had hemoraging in my eyes that slowed me down from driving and going to rehab. I had Occupational Therapy and Physical Therapy at home and had a Nurse visit me. Once they released me I did go to a facility and started to keep a regular routine of Doctor visits going. Up to this point I did not experience any headaches or constant nerve pain. Once in a while I do get a electrical shock type pain or those tiny jabbing stabs. Nothing that I have had to take medication for.

      My heart goes out to those of us that have suffered from those kinds of things. I had hard enough time without suffering from that too.

      Now with only a few days from being a year since my onset. I have GREAT news! I am doing well and still get tired. I am patient and have learned to pace myself. I still get tired and listen to my body. I have a personal trainer and use the pool and machines at the health club and keep up a daily routine exercising at home also. I am getting my strenght back and I am able to do most of my daily routine. Just takes me longer to do most tasks, but I am doing them! Water aerobics and other classes in the water did help alot with balance, strengh and stamina. I know I am [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly. I still see improvements about every two weeks. Those little things in life that make it a little easier each day!

      Did I have Miller Fisher Variant? I am still not sure when I see what everyone else went thru. I just tell people I had GBS! My records show I had MFv Either way I am glad to be part of this Great family and I appreciate what our care givers have gone through. All of you have helped me learn so much and what to expect! Thank you everyone!

    • Anonymous
      November 2, 2006 at 11:33 pm

      I know the emotional complications of MF and GBS I just had a son on 9/15/06I started getting symtoms 5 days after I had him. It hurts because I cant be alone with him sometimes can not even hold him that long. I have a 5 year old boy that came over to me and just laid his head on the side of mine and I screamed so loud because it felt like hammers hitting my face, it scared him. I had to explain how he can not touch mommies face right now, he keeps asking me if I have gotten my smile back yet:) I have to say “no not yet baby, Im working on it.” πŸ˜‰ Im so lucky to have a great support group between my husband and my mom and dad. I didnt have to get a nurse, but it is really killing are income level right now. I had to drop out of school, it seems to just be cutting into our lives so badly. [B]BUT [/B]You have to just keep moving on and thanking God for the things you do have. I thank God that my baby is healthy, I thank God for my family, and I thank him for helping me through this even though its hard to understand. I also thank him for you all so I know im not all alone. Good Luck to all. Christine

    • Anonymous
      November 2, 2006 at 11:39 pm

      I know the emotional complications of MF and GBS I just had a son on 9/15/06I started getting symtoms 5 days after I had him. It hurts because I cant be alone with him sometimes can not even hold him that long. I have a 5 year old boy that came over to me and just laid his head on the side of mine and I screamed so loud because it felt like hammers hitting my face, it scared him. I had to explain how he can not touch mommies face right now, he keeps asking me if I have gotten my smile back yet:) I have to say “no not yet baby, Im working on it.” πŸ˜‰ Im so lucky to have a great support group between my husband and my mom and dad. I didnt have to get a nurse, but it is really killing are income level right now. I had to drop out of school, it seems to just be cutting into our lives so badly. [B]BUT [/B]You have to just keep moving on and thanking God for the things you do have. I thank God that my baby is healthy, I thank God for my family, and I thank him for helping me through this even though its hard to understand. I also thank him for you all so I know im not all alone. Good Luck to all. Christine

      IN a world as large as this, one is never alone!

    • Anonymous
      November 3, 2006 at 9:25 am

      I enjoyed reading your message and your great attitude come out as being so possitive. I am sure this will all work out for your family and you will learn alot from this experience.

      You have been blessed with a caring family and healthy child. Keep being strong.

      During my illness we created “secret hugs” those kind of things made me really feel part of the family but also kept people from touching me in places that were extremely sensitive to their touch.

      My Son held my hand between his hands to warm it up and help with straightening my hands out. After being curled all day that felt soooo good. That become his job until one day I grabbed his hand as he carefullly placed it under my hand. He also seen it was dry and flakey and was given some lotion to put on it. Seeing my skin start to look healthier did give him some satisfaction to see he was helping in a small way to improve my condition. But getting that care from him meant so much. It has really brought us closer! Actually he was also gifted with a well developed knack to read lips and that was so helpful during the time that I was not able to speak.

      With each persons talents in my caregiving I can look at them in a different way now. I see each one of us have different effects from this illness. But I also found out that each one of my friends and family have different talents that they offered, which meant so much to me getting well.

      Christine, rest and get your strenght back you will need it when your family gets older and faster. Save your energy for then!

    • November 3, 2006 at 7:00 pm

      [QUOTE=ktwomack]Hey Canukgirl,

      We’ve talked before. I read the literature that you told me about and I had an “ah-ha” moment! I was never formally diagnosed with Miller Fischer but now realize that I most certainly have every single symptom, including residual facial paralysis (mostly on the right). I have regular spasms that are not controlled with meds. I also have dealt with the lower extremeties weakness, mostly in my knees and ankles. I have occasional falls and have resulted in wearning only low or no heeled shoes to prevent damage due to a fall. This is all after 5 years of “recovery”. I can’t stand to look at myself in pictures anymore…..there is only a lopsided smirk left. KT[/QUOTE]

      I am with you there! I hate what I look like now!
      Schel

    • Anonymous
      November 8, 2006 at 5:21 pm

      Hi Christine and Schel,

      No we are most definately not alone, we are just spread out all over the globe….:) thank goodness we have this forum to find and support each other.

      I find that the isolation that follows this illness to be very difficult to deal with at times. I don’t mean isolation from family and friends, but not being able to just call someone up and meet for coffee, someone who [I]knows[I] exactly what you are talking about a little hard to take at times. With the majority of illnesses people have ready access to support groups and are able to put a human face (besides their own) on what the heck has happened to them. This illness being so rare (and again rarer to have both GBS and MF), it is a double edged sword I find, you are so very thankful that not many have to cope with it, but that in turn leaves you feeling like the “odd man/woman out” at times. Does that make sense? I am finding it hard to articulate.

      Christine, the pain in my face is still wicked after six years. The only person who has asked me about my facial pain is my eye doctor. It floored me when he asked the other day. I told him that it still feels like I have been worked over with a baseball bat. Especially around the eyes and cheekbones. At least I no longer feel like I am going to vomit when I yawn, the pain was so bad with that I would start crying when I felt a yawn coming on in anticipation of the pain.

      As for how it looks, I refuse to have my picture taken, refuse. I have had doctors say “it doesn’t look bad to me”. Which although you do not want a “pity party” by any means, I feel these seemingly well meaning comments minimize what we have gone through and are still going through.
      I despise that my lips do not move when I talk.

      I must admit though, my worrying about how my face looks must be a good sign of recovery as I remember telling my nurses that I couldn’t care less how my face looked or how well I could speak as long as I regained the abililty to walk again…….so the fact that I am worrying about my vanity now must be a good sign of things being more back to my pre-GBS “norm”……..:)

      It’s all about those five P’s of recovery that I made up after I first got home from hospital, “Positivity, Persistance, Priorities, Perspective, and Perserverance”…….when I start feeling a bit down I try to remember my mantra…….:)

      best wishes and hugs to all,

      CG πŸ™‚

    • November 9, 2006 at 7:20 pm

      I block myself out of pictures also. When people say “I don’t see anything wrong with your face” I want to clock em for lying to me. I have had some reletives tell me that they see a difference and I appreciate their sincerety.

      Schel

    • Anonymous
      February 6, 2007 at 6:08 am

      Mine started with paralyzed tongue then spread to neck, shoulders and arms – lost reflexes all over but could still move my legs began intragam within 5 days and immediately started to improve had feeding tube removed after 2 weeks and home after 3 weeks – swallowing took a few more weeks to be right again and for the dribbling to cease. Am 99% ok now after 3 years but some nerves remain affected around mouth and eyes very tired and blurry.

    • Anonymous
      February 6, 2007 at 2:45 pm

      [B][/B] hi all,
      have you read my story yet?,,its @ [url]www.aboutgbs.com[/url] ! page #2 known as survivor48 i would love to comp[are notes with any or allof you!

      thanks
      survivor48
      scott j sieleman
      [email]brett_fan_4ever@msn.com[/email]

    • Anonymous
      March 8, 2007 at 1:41 pm

      I had miller fisher 3 months ago , it affected my balance and speech, and thank god now 3 months later I am 99% fine I walk and talk (can’t stop) I go to work, drive, type on the computer like nothing happened, you can always email me at [email]mosheshia@yahoo.com[/email].

    • Anonymous
      May 28, 2007 at 1:45 pm

      Schel,

      Even though some days are rougher than others for me, I find myself looking at old pictures of myself and crying of what I used to look like. I wish I would have smiled more than I did. I wish that I could eat cereal or soup without it spilling down my shirt. But ultimately I’m healthy, happy, and my kids and husband have a mommy and wife. My dogs and cats are eternally happy to have me around since they would starve without my existence. I’ve got so much to be grateful for, as I’m sure you do. One day they will find a way to stop this GBS monster. I’m sending warm thoughts to you! Karen

    • June 22, 2007 at 9:30 am

      [QUOTE=ktwomack]Schel,

      Even though some days are rougher than others for me, I find myself looking at old pictures of myself and crying of what I used to look like. I wish I would have smiled more than I did. I wish that I could eat cereal or soup without it spilling down my shirt. But ultimately I’m healthy, happy, and my kids and husband have a mommy and wife. My dogs and cats are eternally happy to have me around since they would starve without my existence. I’ve got so much to be grateful for, as I’m sure you do. One day they will find a way to stop this GBS monster. I’m sending warm thoughts to you! Karen[/QUOTE]

      Hi Karen,
      Sorry it took me so long to get back to you. Thank you for the support. I am back in the saddle again of this icky disease. I volunteered to take on more at work to just “help out” for a “month” and they took advantage of it and scheduled me for 2 months like this. I havn’t even made it a month yet and had to call in today because of the symptoms. Droopy face, fatigue, pins and needles all over, feel like I have a 9volt battery charging constantly in my mouth, I drip food all the time out of my mouth. I met with my supervisor this week and told her it would not work out to keep going at this rate and she said “well you told me you would cover!” I told her I would, however I could not predict that I would start feeling this way again. IN ONE EAR AND OUT THE OTHER….. So she calls me back after leaving a message about my symptoms and that I can not push myself another day like this for fear of ending up really ill again and in the hospital and she says “Well Julie doesn’t feel well either! I am scrambling to figure out what to do.” Like I am going to say “oh I’ll try to come in and see how it goes.” Sorry lady, I havn’t called in once yet since being out on my leave last November and your not going to guilt me into risking my health at this time!!!!

      Thanks for letting me vent! I feel much less guilty for staying home to rest today for overdoing it and thinking I can when I know I shouldn’t have. Only one to pay is me and my family. When am I going to learn?

      Schel

    • Anonymous
      July 27, 2007 at 9:19 am

      Wow, this is the first time I’ve been in the Miller Fisher part of this forum but after reading this thread I’m almost convinced that this was part of what was wrong with me. In addition to the face droop, paralyzed eyes/tongue/nose etc. did anyone else have trouble with motion? For a long time I could not watch TV or look out the window riding in the car because it seemed like my eyes could not focus quickly enough and it gave me a headache. Just curious.

      And like many of you I still have residual numbness when I get tired, I drool, I droop, I have trouble chewing and I look like I melted – just on the right side now though. Ahhh… it’s annoying but at least I don’t scare my husband and dogs. πŸ˜‰

      Julie

    • Anonymous
      July 30, 2007 at 2:47 am

      I had double vision and if i focused on a spot i could see that one eye was focused in one direction and the other somewhere else. i also had no peripheral vision. I was only able to watch tv with one eye at a time, luckily one doctor finallys uggested an eye patch when he noticed me squinting – at that stage i was unable to talk or even do sign language and had been dying to ask for something to cover one eye lol. Without the eye patch it was really unnerving not being able to focus and i can see how that would affect motion.

    • October 4, 2013 at 12:01 am

      I had MFS in June this year. I had loss of tendon reflexes, double vision and ataxia. My first symptoms were a feeling in the head I misread as being sunstroke. My neurologist told me tests definitely confirmed that I had MFS.

      I have read up a lot about MFS. Dr Miller Fisher apparently classified MFS as a variant of Guillan Barre as they have similarities.

    • February 25, 2017 at 1:30 pm