Miller Fisher – Double Vision worsening!

Viewing 49 reply threads
  • Author
    Posts
    • #107495
      Anonymous
      Inactive

      Hi,

      I’m currently battling the aftermath of Miller Fisher Syndrome and would appreciate any opinions & advice about my situation. I’ll run through my account below, but I didn’t want you to have to read it all just to get to my question!

      Since being discharged from hospital on 14th January, my double vision is steadily getting worse. The two images I see are both in a horizontal plane but getting further apart! I revisited my Neurologist on 30th January and he said this was something well documented and I should still recover! He hasn’t advised any eye exercises, just to try and do normal things.
       
      I’m really filled with doubt about this, as everything else has recovered so well. Has anyone else experienced this? Should I be doing any form of eye exercises?
      I’d welcome your thoughts.
       
      What happened to me?
      I’d had some sort of coughing bug over Christmas, much like everyone else around where I live, it seemed. I was very tired over this period but didn’t see it as significant in any way.
       
      I woke up on 3rd January with double vision! Major panic! Rushed to my Doctor who quickly referred me to the Hospital. My Partner, Lynne drove me there, where I was assessed over a 2 day period, before being admitted to the Neurology ward. Both she and I suspected I’d had a stroke!
      During that assessment, I had a chest x-ray, brain MRI scan, Lumber puncture and Nerve conduction tests. I lost count of the people who hit me with rubber hammers and the number of blood samples I gave.
       
      I ended up with six Neurologists around the bed, discussing Guillain Barre Syndrome. The senior Doctor suggested Miller Fisher variant.
       
      I must confess that I’m not one for praying unless things are bad! But since being so ill, I have prayed for help and given thanks more times than I can remember. I’m still doing it now.
       
      By the 5th Jan, my balance was poor, my sight dreadful and I had no reflexes! My hands felt as if I was wearing suede gloves and the dexterity was going.
       
      The 6th Jan was my 52nd Birthday – and what a day! I felt tired and weak. My speech was strange and I lost sensation in my skin on my legs and feet. I slept a lot.  The Nurses were checking me every four hours and measuring my breathing. They said I was now a “medium fall risk” and couldn’t leave my bed without help! A Neurologist came and said that following some test results, they now thought it was Miller Fisher Syndrome.
       
      The following day I thought was going to be my last. I was in a dream-like state where I felt I was not really “there”. I needed help with the toilet and my blood pressure was 177/117. I had shivers in my chest and couldn’t swallow well. When I slept, I had nightmares, when I woke it wasn’t much better. There were two nurses standing beside the bed and one said to the other “Ok, when do we worry?” and I thought this was it.
       
      A Neurologist appeared and said we needed to start a five day course of Immunoglobulin as soon as possible. He explained the side effects to Lynne. She agreed, but I was so confused I was convinced they were experimenting on me! Anyway they asked me to sign a form, which I did, but I couldn’t spell my name!
       
      Five days of the worst headache ever then followed, while those daily doses were administered. I just felt out of it most of the time. By day three, I had a little voice in my head, which kept saying “You’re getting better!” over and over.
       
      The changes were remarkable! Balance, co-ordination, sight, skin sensations, all improved within days! I was discharged after ten days in Hospital and told to rest and return in three months.
       
      It’s now 5th February. About a month since I went into Hospital. I have kept a diary of the many aches and pains I’ve had. I’ve had sore patches of skin which come and go in a few hours. I’ve had headaches, eye pains and tremendous fatigue. It often seems parts of my body take turns to feel strange, but it is reducing.
       
      Apart from the worsening sight, I’m doing ok and I’m a different person to the guy who became ill. Trivia doesn’t worry me as much any more.

       
      I guess I will never be able to thank my lovely Lynne and the staff in Royal Preston Hospital for saving me. But now that I say a little prayer or two, they’re all included.

    • #108800
      Roddy
      Participant

      Hi,

      I had MFS in June this year. I was working in Spain and after having just got over a very bad cold I went sunbathing for a a couple of hours I had a week of what seemed like severe sunstroke but which got so bad over the next week ie dizziness, ability to walk disappearing and double vision that I also thought I’d had a stroke.

      I was admitted to hospital on Sunday and the neurologist I saw on Monday immediately identified Miller Fisher. I had the classic trio of ataxia, double vision and loss of reflexes. All the standard tests were done which later confirmed his diagnosis. I had six days of IVG and stayed in hospital for ten days.

      Double vision and ataxia have gone, reflexes are back, but the problem is the profound fatigue for which I have had limited improvement. Perhaps connected with this, I have loss of appetite, difficulty sleeping and sweat a lot at night. I believe this may be a result of damage to the autonomic nervous system.

      Did your fatigue finally clear up completely?

      • #112073
        Robert B
        Participant

        The cause of the double vision for us is paralysis of the muscles that control eye movement. My double vision eventually got better. Doing eye excercises taught to me by my rehab therapist helped a lot.

        I was also lucky to be seen by an optho neurologist. There are very few in the country. They specialize in double vision. I suggest you try and find one, as well as get rehab. Rehab is really important

    • #108812
      Anonymous
      Inactive

      Hi, Argos69 and Roddy,

      My story can be found elsewhere in more detail, but I’ll recap here. At age 48, I contracted MFS as an elementary classroom teacher. This was in March of 2000, and I remember all too well. After fighting off a case of “pink eye” which I’d contracted from one of my students, I began seeing double while correcting Spelling tests on that Sunday night. Not a good thing! After setting up a substitute for a couple of days, I went to bed early thinking I would sleep this off. I’ll never forget when I woke up in the middle of the night and saw TWO distinct digital clocks reading 2:35. Needless to say, after seeing my ophthalmologist the next day, sent for a brain MRI, and finally admitted to the ER after losing all sense of strength and balance, I was diagnosed with MFS.

      I spent 10 days in the hospital, several rounds of IVIG, and sent home. This was the most difficult part of all. The days went by slowly, and my vision did not improve. Here’s where I address your concern, Argos69. As with you, my vision did not improve, even when my doctors said to be patient. My question for you is, it’s now October. Did your vision get better? Are you still struggling with fatigue and balance as well?

      • #112074
        Robert B
        Participant

        Yes! Fatigue is the last symptom to go away. It takes quite a while. Hang in there!

    • #108934
      Anonymous
      Inactive

      I developed Miller Fisher syndrome and was finally diagnosed with it when transferred to the Royal Hallamshire hospital in Sheffield in December 2011 at the age of 66. I had hardly had any health problems before then. I spent 6 weeks in hospital altogether – 3 weeks in the Northern General in intensive care – 2.1/2 weeks in the Hallamshire and 1/2 week near home. When I left the Hallamshire in January 2012 I could not walk but gradually with some physiotherapy I regained my walking. However, the double vision was the last thing to correct itself and that took 5 months. Two years down the line and two years older I have regained a normal routine of life although retired now. But I do not have the strength that I had before and my eyes do get tired if I look at a computer screen for a time. I also get tired more quickly. Hope this helps.

    • #111227
      Normison
      Participant

      Checking in here after a couple of years’ time. How are the both of you doing? I’m the one who posted on October 2 of 2013. I continue to be challenged with fatigue mostly. But more concerned with your vision. Did this improve given a bit of time?

    • #111707
      Tarhealing
      Participant

      I was diagnosed with what was thought to be a case of mild GBS. Initially, I had problems with my cranial nerves and difficulty turning my eye with double vision. I had Miller Fisher suggested to me. It’s been 2 years for me into recovery and I am still suffering with fatigue, eye pain, difficulty turning my eye, blurrier vision and vertigo at times when I overdo things. I’m working with PT. I just wondered if any of you have had these reflares in recovery.

    • #111710
      Normison
      Participant

      Hi, Tarhealing,

      It sounds like you have a variant of GBS that is quite similar to my own. I was diagnosed with Miller Fisher GBS in March of 2000. My main symptoms were blurred, double vision, fatigue, tipsy balance. Long range residuals included double vision (so bad I had to wear a patch) which lasted for a year, no change. I received eye surgery at the USC Doheny Eye Center, which corrected my double vision for the most part and was quite a relief. My vestibular (inner ear) system on my right side was permanently affected, leaving me with a tinge of motion sickness and dizziness, along with bouts of vertigo. I go to balance therapy off and on, which seems to help.

      The interesting thing about this is that, after a period of time, the brain seems to accept all of this, and i don’t think about it like I used to in the beginning months and years. This will all get better for you, trust me. It may not all resolve, but by the grace of God, will become “doable.” And for that I am grateful.

      Please respond when it’s convenient, I’d like to know more details, and whether or not any of the above is similar to what you’re experienging.

      Normison

    • #111721
      Trevor
      Participant

      My eyes are moving since i started prednisone . Double vision is still there when I turn them to the full right or left and that’s something I want to improve. Any thoughts would be good … I’ve been suggested to see a vestibular physio and I’m following that line now to get an appointment.
      My speech has improved but I’m not sure if it’s the vocal cords moving or the muscles compensating – I’m seeking a flouroscopy to see

    • #111723
      Normison
      Participant

      I concur with both of your leads, Trevor. Vestibular therapy has been very beneficial for me, and they understand the double vision and what an important component this is with regards to your balance, etc. I’ve had atrophied vocal chord issues as well. Have the scope procedure, not painful, and get an assessment as to what they see happening. My ENT sent me to vocal/voice therapy which helped, but I still have what my students call a “soft voice,” which is doable, but I have a hard time talking over noise, still.

      Keep up these next steps, all the best your way!

    • #111754
      Lillie
      Participant

      I had GBS/miller fisher in Nov. 2015. My eyes or eyelids would not move. When healing started after IVIG I was seeing double and triple. Needless to say my balance was bad. When I left hospital I was sent to a rehab center where they had me use a patch on one eye for 30 minutes and then the other eye for 30 minutes. I came home in December continuing physical therapy and using the eye patch. In March 2016 I was able to start driving again. I understand the frustration. GBS alone is awful but when the eye site leaves you it causes panic. Hang in there. Rest is very important.

    • #111755
      Normison
      Participant

      Absolutely, Lillie, your words are encouraging. With my own sight marginalized for over a year, my lifestyle was limited with many days where I just felt so frustrated and powerless. I remember doing vision therapy too, which helped tremendously, working with people who specialized in distorted vision, and knew just what to do. It’s not an instant fix, for sure. These symptoms move in and take residence for awhile, but there is a diminishing over time, which gave me much hope.

    • #111850
      Angeliflow
      Participant

      I try to write in english : i have MFS since 11 juin 2016. My double vision was on the left. Today I have simple vision but before to see simple i see double during 1 or 2 seconds and after I see simple. The problem is I fire at my eyes permanently to restick the images and it creates me muscular tensions permanently in eyes, head, neck, arms etc. … I have the head which explodes, the eyes which pull me etc. and when I lie down in the evening, it makes me cramps for a very long time before it not relaxed.
      I don’t know if it’s my myelin or my peripheral nerves who are bad repaired or if it’s just a question of time and all will be good in a few time. Or perhaps, it would be possible it is just muscular, the muscles of my eyes who doesn’t operate together and i would be reeducation.
      I am afraid to stay like that with troubles which worsen(get worse).
      I am very bad and afraid
      Thank for your wish

    • #111851
      Normison
      Participant

      Angeliflow,

      Most double vision MFS patients do improve given time. It’s not uncommon for this recovery of nerve conduction to take a full year, or more. You should be seeing your eye doctor on a monthly basis. He would then take image-measurements to track improvement. Even if there is an ever so slight reduction of “double”, then you know that’s good!

      It’s hard to say what your muscle-tension symptoms are. But I know that during my recovery year I had all kinds of muscle/nerve sensations that I had never had before. My neurologist said that these were all part of the regrowing of the myelin, and to expect weird and unusual things to happen. This may very well be you, but I’d keep a record of these aches and pains and report to your doctor when you see her/him.

      I can feel your frustration and remember well the helplessness that MFS speaks into your days. With God’s strength, don’t allow yourself to project outcome too far into the future. Remember, this is a season. It will not last forever, and it is not permanent. Prayers are with you, and please keep us updated.

    • #111853
      Roddy
      Participant

      Angeliflow,

      My double vision took about four and a half months to go away. Gradually area affected by double vision became further and further away in my field of vision until it disappeared.

      I had strange cramps when I woke up in the mornings, particularly in the tendons in my thighs. This has completely gone.

      I had MFS in June 2013. I felt very ill for six months, and ill for about a year (including that first six months.) I continued to get back my energy levels slowly after that. My neurologist in London said a return to exercise, recovery of previous fitness should BEGIN after about nine months. I am now as healthy as I was before the illness but in my experience, the recovery process occurred slowly over about two years.

      The exercise that has suited me (my age is 53) is taking long walks about three times a week.But I rested a lot when I first became ill.

      Hope this helps.

    • #111854
      Angeliflow
      Participant

      Thank you for your answers.
      My troubles are my left eyes pulls on my muscles As soon as I move eyes and more when I put my glasses I put my glasses to see closely. As if the muscles of my left eye were shortened and as if I have to shoot?
      It pulls me in the head at the same time and the neck and my arm which since is badly vascularized had you it.
      I am alone with my childs and I am so afraid to stay like that wwith this troubles. I am afraid to have depressive illness because my doctors aren’t here for me and have not answers for me. They say me they don’t know if i will be good or not. It’s the reason I am bad now While before I kept(guarded) hope.
      Read you is very important and thak you for your answers. My MFS is little, not big troubles but they during and create more troubles than other according to my neurologist. It is amazing.
      Thank you one more

    • #111856
      Normison
      Participant

      The eye strain with double vision is nerve-racking to say the least. Your muscles are over-compensating (over-working and straining) in order to get the two images together, but your damaged nerves are not allowing this to happen. Your brain will try its best to get used to this, so that you will not be so frustrated. As the nerves slowly heal, the muscles gain new strength to pull those images together.

      Take heart, this is almost like your body being in a coma, where signals are confused for a time. We are all praying that you would be given grace to be strong and wait this out. Remember, this is not permanent, things will improve. My neurologist said, “It’s like watching an apple grow.”

      ANY sign of change or improvement, please send out way. Lean into unfailing Love.

    • #111857
      Angeliflow
      Participant

      Normison you are sweety, thank you very much for wishes. I will write here for news

    • #111860
      Tarhealing
      Participant

      Hi Angeliflow,
      I had many of the same type of MFS symptoms that you have described which began for me back in June 2014, so I am 2 years out. My trouble began following a Tdap vaccine with pain in my right eye and numbness in my face. Then I had this ascending numbness and weakness that went from my toe up my body as my head and face symptoms worsened. I had the double vision and balance issues along with so much pain and pressure. At the same time I nearly lost the ability to walk, could not use my hands well and eventually had problems chewing and speaking. It was the most terrifying time in my life. For several months, I struggled wondered how debilitated this would make me and if I would survive. I did not have very caring doctors at this time but I received good physical therapy and massage therapy. I had one physical therapist who helped me get my strength back with my legs and hands and another that helped me do exercises to fix my eye and balance problems. The help I have received through Physical Therapy was amazing! You may want to check into this if you can. I had a few relapses along the way but the worst for me was about 3 or 4 months. It’s a slow recovery process! Just hang in there and don’t give up. I have some residual weakness that I can still tell in the places that were hit the hardest but it doesn’t really hold me back. I went so long with this before I found out that balance and vision are affected if the eye muscles aren’t working exactly right to keep the image that you see in the right place. Oftentimes, this can be fixed with the right eye and balance exercises. Just thought I would share since it helped me so much. Good luck in recovery and stay positive!

    • #111861
      Angeliflow
      Participant

      Hello Tarhealing,
      Thank you for your answer.
      As for me, my residual troubles are strange and prevent me from resuming(taking back) my activity. I found all my vision and I still have troubles which are situated inside my head. It is as some Plasticine, cramps, that contract in my head., my eyes and my nape of the neck which is very hard. It is so much tightened(stretched out) that that cracks(fails) some time.
      I see double a fraction of a second before seeing simple and my eye has problems of spames of convergences, that is it does not see clear(net), it moves all the time to see clear(net).
      I saw my neurologist-ophthalmologist yesterday, he tells me that it is my muscles which are too much contracted and that it is cramps which are going to pass. Besides, he says that my brain registered(recorded) the double vision and that’s why I see double before seeing simple. My brain have to make as a désenregistrement or reset. My problem is really my head and my neck and my arm. I also have difficulty trusting the doctors because it lasts for more than 5 months and my members are always very tense.
      I am under medicine against the depression, is this voucher for the disease? Took it you?
      From when were able to you to return to your professional activity?
      Yours,
      Angeliflow

    • #111862
      Normison
      Participant

      Just to let you know, Angeliflow, my double vision was all you have, and more. I was a 4th grade classroom teacher for 27 years and the vision thing forced me to resign. My diplopia was so bad that I eventually had eye surgery on my eye muscles, which worked great. Today, I have a little double vision in my peripheral, but all else is fine. I don’t think you’ll need this, however. Your’s will improve ever so slowly. The day to day is a challenge, keeping hope mentally. It sounds like your eye specialist is addressing all he can, for his experience with MFS is most likely limited, for it is so rare. I agree with Tarhealing (above)… find a good physical therapist. They often know as much if not more than your doctors, and can give you relief.

    • #111863
      Robert Shannon
      Participant

      I didn’t read all replies so I hope I’m not doubling.
      GBS and medications gave dry ete/mouth. Similar to Sjoegrens.? The dry eye in turn made my cornea curve and become somewhat sensitive too light. Blurred and double vision. My eye Doctor is going to give me a stem cell treatment. They claim these cells will return a good eye . My left is worse than my right. One eye is done at a time.outpatient and only half an hour. So simple that opthamologists do it. I’ll keep you informed.
      Bob

    • #111867
      Angeliflow
      Participant

      I have a question. My troubles in my head are consecutive to a too much muscular activity of my eye. I need tout know how do you do with your eye during thé sick and double vision. Do you use the two eyes everytime or do you mask/hide one ? If yes, during how many time per day and how many months ?

    • #111868
      Tarhealing
      Participant

      I went to see a physical therapist who specialized in vestibular disorders and he gave me exercises to do with my eyes which corrected my double vision and balance disorders. It took about 4 to 6 weeks but it completely fixed my problems with this. He said that I had one eye that did not quite track with the other eye because of the damage to the nerve that controlled the muscles for turning my eyes. It apparently was enough to throw off my vision. When I looked around everything didn’t look right either. It’s like things just didn’t feel right spatially. At the time I wasn’t sure why but I could tell that the muscles were not working right in my face and my eye felt some delay when I tried to look at things. My primary doctor or neurologist at the time couldn’t see this from looking at my eyes but this PT had special glasses that he used to measure the turning of my eyes. Even the slightest delay can throw everything off but it can often be fixed with these exercises. He worked with me there and gave me exercises to practice at home. It was so simple to do and I wished someone had told me sooner because it was terrible to suffer with the double vision for so long when it could have been fixed sooner. I thought it would be better if I covered that eye but he said that it was better to work with the eyes to get them to work together better again and the brain to correct for the damage and adjust to fixing the problem. The eye doctor never could help me because he said that my eyes were fine but I guess it was good to rule out other issues. It was, however, the muscles around them the whole time. And glasses didn’t fix it because I tried that too.

    • #111870
      Normison
      Participant

      I also tried the prism glasses, and they didn’t work for me. My double vision was severe, not just blurry. My eye doc had special instruments and could measure my diplopia accurately, which would be the distance between my double images. He said it was definitely neuro-muscular. I went to a visual therapist/balance therapist, and they are truly the best and most informed, as Tarhealing describes. They helped me tremendously. My double vision, however, did not improve sufficiently, so I was referred to USC for what is called strabisimus surgery, which is what they do to correct lazy-eye in children. It’s an out-patient procedure. This adjusted my eye muscles so that I could have singleness of vision again. And it worked amazingly well. It took a while for my brain to adjust to the “new” vision, but it was successful, and I know a couple of other MF folks who had the exact same surgery, and are fine. Up until then, I wore an eye patch over my affected right eye during the daytime. And for the last six months, my optomatrist made for me an “occluder” which was a contact lens with a dot on it the size of my pupil. This was like an eye patch, and worked quite well. After my surgery, and that was 15 years ago, I was fine and have been since.

      Angelflow, from what you describe, it does not sound as though your vision is anything near as serious as mine was, and I think, with visual therapy, your’s may well correct itself. For the majority of MF folks this is true. But please know, that if it does not improve the way you expect, there is still hope! You will live through this. It seems like a long time in the day-to-day, but it’s a valley… and there is an other side.

    • #111871
      Tarhealing
      Participant

      I’m glad that you were helped, Normison! When this happened to me no one really understood why my vision was like this. I didn’t get the diagnosis initially so they just thought I was making this up because my eyes were healthy. No one ever referred me to a visual therapist/balance therapist. I just felt terrible for several months. I kept trying to sleep it off but that didn’t work. My sister thought that I must not be the only person to ever have something like this and found this PT specialist online because I couldn’t really see well enough to do much searching but I tried. He was an hour away but well worth the drive! It wasn’t long before I was able to drive myself there because the therapy helped so much. After a sinus infection 7 months later, I had to return for more therapy because of a relapse of some of the balance issues. It didn’t take me long to get back on track again. Glad to know there is helpful surgery for worse cases. Have you met MF folks who had any recurrences over the years?

    • #111872
      Normison
      Participant

      You were blessed you found that therapist, so happy that worked out! Yes, I’ve known of relapse, but super rare, even with mainstream GBS. I’m wondering, do you experience any residuals from your MF experience at all on a daily basis? Even after sixteen years, I have balance issues, mostly motion sickness. I simply cannot drive in a car as a passenger, so I’m the designated driver fulltime! I cannot do boats or amusement park rides, and have dizziness often when I’m in a crowd and have to do a lot of head turning suddenly. My doc says that I don’t visually process as well now, it simply takes a lag of time for this to take place via damaged nerve paths. Even in shopping malls or stores, I can reach this stimulus overload point and just have to sit/lie down and recover. Overall more fatigue than before, especially upper body. Definitely an altered normal, but it’s all doable, for which I’m grateful.

    • #111873
      Angeliflow
      Participant

      Tarhealing, Normison, thank you for your answers. My problems are differents of yours : i have no troubles with double vision now but avec I have muscular cramps in my eyes, my muscles close my eyes themselves. When I look closely it fires at my eyes, it makes me “big eyes”, and my muscles make them close themselves alone. I have as of the pate has to model (plasticine) in the head which makes spames and crispastions in my nape of the neck.
      My doctor tells me that it is the muscular overactivity and that I am gérie because I do not see anymore double. Thus I do not understand these disorders but as I was been very badly looked after. Prisms degraded my vision and I so had pain that I wanted that we bandage me eyes. Thus I believe my neurologist ophtamlologue because my eyes are very tired by these ill-treatment.
      How made you to see without prism, you closed an eye? You had a mask?

    • #111874
      Angeliflow
      Participant

      what is ACDE ?

    • #111899
      heeljeff
      Participant

      Interesting info, thank you! After 9 months of gbs recovery, I’m left with some pretty bad strabismus and what my orthopedic surgeon calls ‘no extrinsic extensors’ in my hands.
      I’ve had a fresnel for most of the last 9 months with no improvement. My neuro-ophthalmologist has referred me to an eye surgeon, while my regular optometrist is pushing ‘vision therapy.’
      My emg neurologist says I have lost function, but give it another 8 months to see where it ends up.
      I don’t know what to do. It seems even my specialists are in uncharted waters when you say ‘guillain barre.’ Certainly my optometrist has never seen it.
      No one wants surgery but vision therapy is $5000 out of pocket for me, and depending on who you ask, some say this is snake oil, with zero chance of working.
      Any suggestions??

    • #111906
      Normison
      Participant

      The Fresnel did not work for me either. It was designed to retrain the eye, but there was no improvement whatsoever after many months. My optometrist even made me an “occluder,” a contact lens, clear, with a black dot the size of my pupil, to wear in place of the pesky eye patch. This I wore for nearly a year.

      I made an honest schoolboy attempt at Vision Therapy. I understood the concept, and I can’t say it was harmful, but the nerve (6th cranial nerve, as I recall) was so damaged, it simply would not cooperate. However, I do remember some GBS folks who did have success with VT, so I gave it my best shot, but to no avail.

      This is when my neuro-opth suggested I consider strabisimus surgery. The procedure was out patient, readjusting various muscles behind the eye to straighten my eyes out and return my single vision. I was desperate by this time, and went for it, and was glad I did. He said it may take a follow up or two to get it just right, but mine was fine after the first round. That’s not to say it was perfect, but I could now see in stereo, and had depth back into my visual field, which was wonderful. After a few weeks, my brain adjusted to the new-normal, and I’ve had no problems since, and that was 15 years ago. Only when my eyes are weak, or I’ve had more than one glass of wine at dinner, do my eyes begin blurring. Otherwise, all is amazingly clear.

      I do remember wrestling with this decision, right up to the surgery date. That week, however, I’d received a phone call from a Navy Admiral in W. Virginia who had the exact same predicament with his Miller Fisher double vision, and had successful surgery to correct. His story tipped me over the line, and I was all in for the procedure. For me, it was the right thing, and I am thankful to this day.

      Hope this helps.

      • #111907
        heeljeff
        Participant

        I appreciate your story Normison, thanks very much, it’s reassuring!

    • #111908
      Tarhealing
      Participant

      Normison, my eyes blur when I am tired or get too hot outside. I will notice the weakness then too with turning them but it is pretty slight and doesn’t throw me off too bad. Just wondered if you notice this with extreme heat. It used to really cause me trouble and it didn’t take much activity to cause problems but now it takes more to affect me, thank goodness. If I stay up too late, those muscles seem weaker in the morning and I will notice a delay with opening my eyes at the same time. It gets better after a few times and I don’t notice it as much. Pretty much when I overdo things I feel small symptoms everywhere I was hit the hardest but they don’t limit me like they did previously. It’s a reminder though. I’m 2 & 1/2 years out and very lucky at this point. I can’t run like I did before but I can still run. If I push it, I pay a price. It’s all about balancing my new norm which I’m still trying to figure out.

    • #111909
      Normison
      Participant

      Yes, Tarhealing, absolutely with both heat and exhaustion. I find that it’s the brightness of light that bears upon the compromised nerves, hence affecting muscle stamina. Even going into a mall or Lowes (used to be even a grocery store), would throw up flags and take me down a notch. Another thing my neurologist pointed out was that actual processing from my eyes to brain would be slower, and that stimulus overload might be expected, and result in exhaustion. And was he ever correct on that one. To this day, if I swing my head quickly from one thing to the next, or from one side to the other with any suddenness at all, I end up in a dizzy slog. Similarly, if I am in a very busy place, taking in lots of visual things, I get fatigued quickly. Oddly, it’s the same with being a passenger in a car. So, it’s changed my lifestyle somewhat, but, like you say, it’s doable, and I don’t even think about it much. When I slip I simply know I’ll be dizzy with a bit of vision-blur for awhile.

      Ever since my GBS onset, I’ve always gotten tired much quicker, just doing everyday things. I walk and swim a lot, even in the ocean, but with much less stamina than prior. It’s fine, however, I find myself enjoying the little bit that I can do much more than the quantity of competitive activity I did before my illness.

      It sounds like your’s is similar, but perhaps not as severe as mine was. I think you’re healing fine and, what does not completely restore, your brain will thankfully adjust to, and you’ll be fine. Stay content… it’s really something that is acquired, and I think you’re doing well.

    • #111911
      Angeliflow
      Participant

      Tarhealing, Normison, where do you come from because I leave in Paris and I find the French medicine is not evolved on the rare diseases.
      I still have my troubles in my head and eyes.
      Had you muscle spasms with cramps in the eye and the head ?
      When I am on the computer my eye contracts. At the end of how long were able to you to reread a book or a screen? What made you during this time there? Just sleeping ?
      I have question : How made you to see during the period ? Had you a mask on the eye? If yes, had it you on the same eye or in alternation the left eye then the right eye and how long left it to you ?
      Were able to you to make a stroll every day or you took time to go outside?
      Thanks and my best wishes for Christmas and new Year holidays

    • #111912
      Normison
      Participant

      I’m sorry you are experiencing such weird symptoms, Angeliflow. I do remember having pains and almost like mini-shocks of pain going on around my eyes at the time. My double vision lasted a long time, and only strabisimus surgery made it go away. I wore an eyepatch over my right eye, which was the eye that was affected by the GBS. It was always worn over my right eye. Otherwise I simply could not function visually, not at all. If I didn’t wear the patch, i had to close my right eye to see. My good, left eye became dominant over time, and I could see well, just didn’t have depth, like everything had a “flat” appearance. However, I did get out, take strolls, and even learned to drive with the eyepatch. After surgery, I felt so relieved, it was like getting a new pair of eyes! However, you may not need that, for time may well heal your awkward vision. I pray it will. Hope this helps.

    • #111914
      Angeliflow
      Participant

      Thank you Normison. Doctors think it i muscular troubles because I was so stressed that I forced on my eyes since June dozens of times a day to see simple and also to test me all the time. Of the blow my neck was also very tense, where from the muscular cramps in eyes, head at the level of the muscles of eyes and my nape of the neck and shoulders, arm etc….
      I really hope that all this is going to pass in time but I request my eyes even today with the computer, take a stroll a lot etc. but do not test me any more

    • #111915
      Normison
      Participant

      Absolutely, I would suggest not over-testing your eyes. You can try an eye patch for when you do computer work or read, which will allow your dominant eye to focus and get the job done. A little strange at first, but your brain will adapt surprisingly well with the patch. But wear it off and on, not all the time. When you take a stroll, no patch, just let your eyes wander and get sunlight.

      My neurologist said to allow this to take place for a year, and see if there is any improvement whatsoever. If this started for you in June, then you’re halfway. I’ve known some GBS patients to take 8 months to start seeing noticeable improvement on the vision. Then, from there, the healing is quite rapid. I hope this for you. My prayers for peace for you today. The waiting is truly the hardest part.

    • #111919
      heeljeff
      Participant

      I notice quick fatigue as well. If I overdo it playing with my kids, or yardwork, or whatever, I notice excessive numbness and weakness for 1-2 days afterwards, then it’s back to the ‘normal’ level of weakness. I used to have more frequent ‘bad days’ where I would wake up and have trouble seeing, walking, etc, but they have become more rare. Bonne chance, angeliflow, though I wouldn’t say Drs in France are behind the times-I had to see 4 docs in NC, USA before the proper tests for gbs were done.

    • #111920
      Normison
      Participant

      Similar to heeljeff, I experienced the same. My diagnosis being Miller-Fisher, the damage was descending, starting in my vestibular system and eyesight, with mostly upper body involvement. I remember thinking, “Today, I’m going to wash some windows” during my recovery at home, and started in with my normal mode. After twenty minutes, my entire upper body muscles went into acute fatigue and borderline numbness. It took me 48 hours to return to my baseline, with normal, altered strength. However, walking I was fine, all lower body. So weird… it certainly taught me where my limitations are! 16 years later, I still have not returned entirely to my pre-GBS self, but I’ve adapted to these things and now little/no bother. I just have to watch myself, and be realistic as to what I can and cannot do.

    • #111921
      Tarhealing
      Participant

      I have experienced this same type of fatigue, weakness, numbness following me overdoing it. After 2 & 1/2 years, this has gotten much better but I can still tell it. Then after a couple days, I’m back to my “normal” self again too. Whenever I don’t get enough sleep, I can feel the symptoms in my eyes. Whenever I don’t eat soon enough and get a hunger headache or have a sinus infection, that nerve in my eye will hurt on and off for a couple of days and I can tell it just isn’t turning right. In a couple days, it’s better. It used to be so much worse and I needed physical therapy to help because my balance would be affected. I still watch it though. And Angeliflow I am finally getting diagnosed with the Miller Fisher variant with my current neurologist and this happened to me back in June 2014. Initially, I had trouble seeing the t.v. and computer screen and it was hard to do much of anything. I walked outside when I finally could but just looking around was weird and overwhelming and my legs didn’t want to work. I got back on my feet by doing a little each day along with PT. I am in NC too and this is my 4th but best Neurologist. Wish I had found him then! I felt like I was in a terrible area for experienced GBS doctors. It’s just so rare. I hope you can find good medical care and PT and are on your way to recovery!

    • #111922
      Angeliflow
      Participant

      Thank you Normison but I can see everywhere now, since 1 months but I have again this troubles(crmaps and muscular spams and the very stiff nape of the neck that my neurologist explains by a too much activity of my eyes.

      Me too I have the arms very tired and cramps. All the top of the body is more tired and tightened because I force.
      Best wishes

    • #112053
      Angeliflow
      Participant

      Hello Tarhealing, you wrote “I went to see a physical therapist who specialized in vestibular disorders and he gave me exercises to do with my eyes which corrected my double vision and balance disorders. It took about 4 to 6 weeks but it completely fixed my problems with this.” Could you explain me these exercices for iI try to do them.
      Thans a lot

    • #112171
      kronokro
      Participant

      Gabapentin/Neurontin and Lyrica made my double vision come back. Had to quit both.

    • #112245
      Tarhealing
      Participant

      Hi Angeliflow! I’m sorry I haven’t explained the eye exercises. It’s so hard to describe it in words so that someone can understand. Are you doing any better? Have you found a therapist to help?

    • #113268
      Normison
      Participant

      Hi, Angelflow, how are you doing? Have been away, just now revisiting, and am anxious to hear of your progress, hopefully positive.

    • #113961
      ZEN172172
      Participant

      Hi I had Miller Fischer last year.The double vision lasted about 2 months and was scary. However keep faith and with prism glasses which correct it you can even drive a car legally and it’s quite safe. Bit by bit the general symptoms decline and after about 6 months things become more normal. It took one year to be signed off but I still have a slight tingle in my finger tips. Vision is 20/20 . I was lucky to avoid breathing difficulties and was not on a ventilator. Good luck and if you have questions happy to help

    • #113964
      Normison
      Participant

      Excited to hear of your healing progress! I had the same double vision, although mine did not resolve in a year, which was realigned by eye surgery at the Doheny Eye Institute at USC in January of 2001. Since then I’ve been fine, with just a tinge of awkwardness in my peripheral, and a slight decrease in range of eye motion. That said, I’m so very grateful. The Miller-Fisher took out the vestibular system on my right side, which left a residual of motion sickness and dizziness/occasional vertigo. However, even with that, I’ve adjusted fine. Like yourself,I was spared the breathing involvement as well. 10 days in ICU and another two weeks in rehab and I was free to recover at home. GBS did end my 27 year career as a school teacher, but since I’ve found other things to do that I love. A journey I would never have dreamed of. Long distance run for sure but, by the grace of God, so doable!

    • #113965
      Tarhealing
      Participant

      Hi Normison, Glad you are doing so well! I notice that I still have a slight decrease in range of eye motion in my right eye. I had the double vision too and no ventilator. I feel fortunate. My dizziness and vertigo got better with special a vestibular specialist. I hate that problem! You always wonder if it will pass and then it always would but it’s so debilitating at the time. When I get a headache, for some reason I always get the worse pain behind the eye that I had so much trouble with from the Miller Fisher. I still feel a little lag time with that same eye when I’m looking at things. I know it’s damaged. It’s something I accept and work around. One of the reminders. All in all can’t complain. I just always wonder what others who have experienced GBS still notice. I never had surgery or wore special glasses, just special physical therapy for my balance and strength.

    • #113966
      Normison
      Participant

      That’s so true how you say “accept and work around.” It’s been a new “normal” ever since, but not exactly a bad thing. More like a shift in life and lifestyle really, something which works out with time. When I finally embraced the changes, I found peace. I’m glad to hear you avoided the paralysis like so many experience with Miller Fisher. It’s a reminder to me, daily, of just how frail I can be and how I lean into Grace moment by moment for stamina and strength, even after 17 years post GBS! The experience definitely resulted in a slower pace of things overall, but my days are filled with what I am able to do with my limitations and I’m good with it. The pain behind the eye… oh, yes, remember that well. Sharp, piercing, same place each time. My neurologist said that it’s a good thing, the body making attempt to repair that damaged mylen. I say have hope for your future… you’ll live to tell a great story and give strength to those newly challenged.

    • #113967
      Tarhealing
      Participant

      It is the worst sharp piercing pain in the same place! Feels like an ice pick to the eye. I had it originally but now only randomly. Always behind that eye. If something flares it up, it can hurt for a couple of days sporadically but then back to “normal.” I’ve always known that eye was damaged. I can feel it and tell it. The doctors never could see a problem with it but the special PT did. And my vision is perfect in that eye but that eye does not move right and that throws things off a little but I have learned how to adjust. You make me know that I’m not alone with this. I’m out 3 years but my neurologist said 2-5 year recovery period. Did you ever quit having that pain?

    • #113969
      Normison
      Participant

      Yes, the ice-pick (good description) pain went away eventually. However, even now, every once in a long while, it visits me. Not as sharp but, nevertheless, there. Like an old friend checking in on me. Ha! I know the vision thing with me did alter things. Even after surgery, different sensations came up and I had to get used to them. I can tell that the muscles/nerves in my one eye suffered permanent damage, but I’ve learned to compensate and I hardly think of it. I do, however, need to watch my peripheral, especially when driving. I simply do not have the range of motion that I had prior to GBS, worse to one side. My vocal chords have also prematurely atrophied, and it’s like I have lost a lot of my voice-volume. My doctor says this is most likely a long term effect of the M-F nerve damage.

Viewing 49 reply threads
  • You must be logged in to reply to this topic.