Miller Fisher Syndrome: Fuzzy/Foggy Head & Emotional Outbursts

My name is Max, I was diagnosed with Miller Fisher Syndrome on 4th October 2013. I was in hospital for only a few weeks (one week in intensive care receiving IVIG) followed by some time on a neurology ward.

I had the usual problems with balance, double vision and loss of muscle reflex, loss of swallow; my diagnosis was confirmed via anti gq1b test which came back positive (highest the neurologist had ever seen). However since leaving hospital I have developed numerous other symptoms that weren't present during my time in hospital:

Stiff face, Stiff tongue, Dizziness, Vertigo, Diarrhoea, Heart Burn, Concentration problems, Fatigue, Light Sensitivity, Voice Disappearing, Tinnitus, Emotional Outbursts etc.

They seem to go round in an endless loop with one becoming less prominent and then being immediately replaced by one or more other symptoms.

My symptoms keep changing so although I'm nine months into this illness I don't actually feel like I've made a huge amount of progress. Almost none of the original symptoms are present with any regularity. I haven't worked for 9 months now and my sick pay is about to run out so naturally I'm starting to have a few more doubts about getting better.

Anyhow, I have a few questions and was wondering if anyone had any answers/advice etc.

1) My neurologist told me that this illness wouldn't affect my brain, yet I have this dizziness and fuzzy head almost constantly at the moment. Has anyone else experienced these symptoms and more importantly, did they get better? They are two of the most disabling symptoms I have had, the tingling hands etc. I can cope with but this is just horrible. I struggle to concentrate, to talk, to think, it makes me a bit of a shell of a person.

2) I have emotional outbursts, originally my doctor thought they were stress/anxiety induced but changed his mind as they seemed to be contrary to my general mood. I can be perfectly happy watching a film or talking to someone and then for no reason I suddenly burst into tears thinking this will never go away. I scream out in distress of how horrible it is and then twenty minutes later I'll be happy watching a film again. This symptom didn't come on until about four months in and has been present for all but two weeks since. Has anyone else experienced this symptom and more importantly, did it get better?

3) Does the fatigue get better, I'm sooooo tired all the time?

I had Miller Fisher syndrome in June 2013. I had extremely poor concentration at first, to the extent that I couldn't concentrate easily enough to watch/enjoy TV. My concentration has improved a lot since then, but it improved almost imperceptibly slowly.

I have not had exactly the type of emotional outbursts you describe but have experienced many types of extreme, unstoppable mood swing. I think these must have a physiological basis as I never used to experience anything like them prior to MFS.

Enduring fatigue is my major problem. It is slowly improving but like my concentration it is improving almost imperceptibly slowly. My neurologist told me it would take a year before I could start to seriously work on getting fit again. I have read in research papers that fatigue can be the central nervous system's way of telling us to rest our bodies but I am not scientifically trained so you would have to ask an expert about this.

There is a useful facebook group here:

I too spend a lot of my time sleeping whenever I have a chance.

Thanks for the reply Roddy, it's great to actually hear from someone who has the same illness. I've posted on a few message boards but as it's so rare no one has ever got back to me!

Ar you managing to work yet? My sick pay is about to run out so life is going to change a lot in a few weeks time. I think i'm slowly getting somewhere but I've been here so many times before and then gone completely backwards that it's difficult to believe that things are actually improving.

Does your illness tend to cycle, I seem to be in an endless loop of symptoms arriving and disappearing. No pattern, not induced by exertion, not reduced by rest etc. I've not seen my neurologist for a few months and he doesn't want to see me again until December so I'm just waiting...

I've applied to join the Facebook group, thanks for the heads up.


I have taken a year off work, and am now looking for work again. I could not have worked before that in my old job, as a teacher, as even when healthy it was exhausting work.

I have a personal theory (not real science!!) on Miller Fisher. I think the fatigue can be partially a generalized burn out/deep exhaustion, happening for different reasons in different cases, and the MFS is just one element of that exhaustion. That's why, in my opinion, the fatigue can be so severe and long lasting even when the MFS symptoms are relatively less severe, as in my case.

The improvement rate for fatigue is miniscule. I notice improvement most when I stay in the house for a couple of days and then am out walking and can at least notice some tiny improvement.

I don't believe exercise directly helps nerve regeneration, (it doesn't seem to have any significant effect in my case) although of course it keeps one generally well, relaxed and sleeping well. I've heard a few people on the facebook groups say rest is the most important thing for nerve regeneration (one of whom was a scientist.)

Re. the effect of rest on symptoms- After discharge from hospital, (June 2013)I was always waking up with body cramps and exhaustion. The cramps disappeared gradually until I was waking up with exhaustion (and depression caused by the exhaustion.) Over about the last month or two, I've been waking up not so much with exhaustion but just no energy/ a feeling of inertia. I am now hoping, but not expecting with any certainty, that I will wake up with a positive surplus of energy as I used to feel before getting sick. Rest has an effect but it's effects are spread over many months.

There is also this UK GBS group that has a lot of visitors:

No matter what anyone else says, you must believe you will get better. When you have MFS it can screw with a lot of your mental, emotional, and neurological functions (depression can be a symptom). I had a very debilitating form of viral labrinthitus that they believe caused my MFS and caused my brain stem to swell as if I had bickerstaff encephalitis. I was told when I first got sick to "buck up and get over it" by both friends and family.

Most didn't even believe that I was really sick until the tremors started to kick in. You have to keep strong knowing that you WILL get better. I nearly committed suicide because of how sick and ill I constantly felt. I would wake up thinking "this will never stop, it wont get better, and no one believes me so what's the point of getting up".

I was diagnosed with a "mild" case of MFS in October 2013. By the time they diagnosed me, I was already over the absolute worst of the symptoms but many were still very prevalent (severe pain to the skin, visible ataxia, tremors, weakness and loss of control of muscular and tendon reflexes). I was told that I was luck as MFS can affect the respiratory and pulmonary systems and it could have been hospitalization or even death.

When I first had the Viral Labrinthitus, they couldn't even diagnose it until almost 4 months later when I took a balance test and found that my left eye was not tracking as well. I went to a local clinic 2 times for abdominal pain, constant vomiting, a slight fever, severe dizzyness and vertigo, and dehydration. They gave me a saline drip and took blood tests and said I was depressed and stressed after dealing with this constantly for 10 days (I wonder why?). They game me paxil and lorazapram without considering how I would react to it. 3 days and I was ready to crawl walls and peel my skin off. It was disgusting. I immediately called them and told them to take me off. They said "Let us talk to the dr. about this. We'll get back to you..." It took them till the next day to tell me it's okay to not take them.

The damage I received was in the semi-circular canals in the inner ear on both sides (which is located right next to the brain stem and most of the other nerves that control you body).

I called my ex whom I was really close with (but hadn't been on the same track for settling down) and told him that I needed help, I needed company, and that I needed to be watched but I didn't want to go to the hospital because they would put me on anti-depressants which I couldn't have. He spent every weekend with me from then on and any other days he could spare. He drop over an hour each time to see me and checkup on me even if it was for only a couple hours. He went to doctor appointments with me because my brain was so fuzzy and couldn't recall exact dates. I was still stubborn enough to sign up for college courses so he helped me with homework.

I ended up getting the tremors and neuropathy not to long after school started in the fall which were the key symptoms I needed to have me diagnosed but my apt was 1 month from then. They tried to put me on effexor (prior to diagnosis), which, looking it up later, was a big mistake on their part. It has in the side effects section (might cause GBS). It made me feel like my brain stem was being pulled out of my head on top of everything else that was going on. It has given me residual migraines that occur at random.

Through all of this, I lost 2 jobs, was suspended from school, was losing my friends, was losing the place that I lived, almost lost my car, and yet, today I found enough hope to get a great job that works with me that pays me a living wage, a life partner whom I live with now, and a determination to finish my degree (and OMG I can almost walk like normal). I still deal with residual numbness and weakness, temors, and pain...and the new migraines thanks to effexor. I even have a form of dyshidrotic eczema thanks to MFS. No matter how bad it seems, don't ever give up, don't regret your decisions, and find someone or something to live for, to distract you and potentially love you back. Also, stay away from Dr. Google. Dr. Google is no better than WebMD. It all leads to cancer and death. (all of the above sounds really cliche but do keep it in mind)

My advise would be to go for a 20 minute walk 1-2 times a week. Get fresh air. Only go a couple blocks at a time. Let your body heal, and then work it but not to the point of pain (it just defeats the purpose of your body recouping and makes you not enjoy the walks anymore). My first walk I went 2 blocks and I almost couldn't get back to the house, but I did it. I made it my goal to do the 2 blocks and back without issue. After a month and a half, that wasn't so much of an issue anymore. I can now hike up 3 flights of stairs, several times a day, no problem. Don't use the elevator, don't use the easy way unless you absolutely need to. Your body is a lot stronger than it seems when you are in pain, you just have to believe in yourself. Also, on a side note ***having sex raises pain tolerance just a bit and is still enjoyable, builds stamina, can be a legitimate workout, and is over all healthy for your body regardless the stigma our society has about it. It is something to consider and it isn't usually on the top of a sick and stressed persons mind. I found that it does help but to each their own.

I also had MFS. I found that the dizziness and confusion was directly linked to the amount of Gabapentin I was on (was at 2400-3000mg/day and decreased 300mg/week after discharge). After a week of being completely off of it the dizziness and confusion stopped. I still get a bit emotional, but I think that is a normal part of dealing with an illness. Even though I am doing really well, I still have freak out moments, but they are getting better as I get better.

Hi IT Girl, which doctor did the balance test and found out your eye wasn't tracking? Mine feels this way.