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  • November 10, 2016 at 5:42 pm


    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.

    October 7, 2013 at 10:15 pm

    Roddy here additional question. If you have played in bands, you know the things that go with that include social situations with involving alcohol. I haven’t given up drinking or, sometimes, smoking cigarettes. I wondered what your opinion is on this as well?

    October 7, 2013 at 10:10 pm

    Hi Northernguitar Guy,

    Thanks for replying to my post. Playing guitar is very important to me. I really want my playing to return to its former level, if that’s possible.

    You mention that it takes a while to warm up nowadays. After warming up, can you play as well as you used to? Are your hands as fast. And what style of music do you play? I play a sort of hybrid influenced by blues, funk, rock, and bossa nova.

    When I had MFS, I did not notice hand problems at the time and could still write/feed myself etc when in hospital for ten days with six days of IVG. I had the ‘classic’ trio of double vision, ataxia, and loss of tendon reflexes. And also general fatigue. The double vision is 99% better, the ataxia has largely gone, reflexes are back but there are still problems. There is extreme fatigue, along with tingling (signifying nerve repair, I believe, so I’m not too worried about this), times with muscle tightness and some nausea. This fatigue is also affecting my playing it has made everything much less enjoyable, including music.

    Do you mind me asking if you had MFS or GBS? And when the condition was at its most severe, were your hands affected?

    Thanks again for your information in your reply.

    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.

    October 2, 2013 at 5:14 pm

    Thanks Normison for a detailed, informative reply. You took something very positive from the whole experience.

    Regarding dexterity, did you get literally 100% back. I realize this may be asking the impossible, but playing music is for me, as I am sure it is for you, a major pleasure in life and I would love to regain the spontaneitty of playing, including improvised playing with others, where I don’t have to think about what I’m playing. It ‘just happens’ if you know what I mean.

    I was in hospital in June this year for ten days with ataxia, double vision and disappearance of reflexes and had six days IVG.

    Would you mind me asking what your hospital experience of MFS was? I am trying to get as much perspective on the whole thing as possible.


    October 2, 2013 at 2:21 am

    Hi, I had Miller Fisher (GBS variant) in June this year. Is there anyone in this group who has had Miller Fisher. At this stage, my sex drive and capability are almost non-existent. Anyone who’s been through MFS had similar symptoms?

    October 2, 2013 at 1:41 am

    I had Miller Fisher variant June this year. I play the guitar. I was working in Spain when I got Miller Fisher variant (of Guillan Barre). Apart from some tingling in my hands, there seemed no difference in my guitar playing afterwards but now I am back in a colder climate (London, UK) and my hands feel a bit cramped and slower. Maybe climate (and the relaxation that induces) and playing music are connected?

    October 2, 2013 at 12:27 am

    Has anyone got experience of Miller Fisher syndrome. I had Miller Fisher in June this year. I am still within the (typical) six month recovery period but at the moment have lost sexual desire and capability. Are there any males recovering or recovered from MFS who can advise me on this?

    October 2, 2013 at 12:23 am

    Has anyone got experience of Miller Fisher. I had Miller Fisher in June this year. Am still within the (typical) six month recovery period but at the moment have lost sexual desire and capability. Are there any males recovering or recovered from MFS who can advise me on this?

    October 2, 2013 at 12:15 am

    Hi Normison,

    I read on one of your other posts that you became a piano teacher after MFS. I play the guitar and have some slowness of movement in my hands, and a bit of tingling (although the latter is not really a problem and my neurologist said it shows that nerves are healing.)

    I was wondering if you had experienced the same slowness of movement in your hands when playing the piano and did it clear up?

    October 2, 2013 at 12:02 am


    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?