My bout with GBS variant Miller Fisher Syndrome

Hello! I just signed up and thought I'd post my experience and see if anyone has any general input for me. This may end up being a little long winded, but as I'm sure many of you know, it's not like there's a lot of people around in real life who've had GBS/MFS so it'll be good to tell my tale. Toward the end of last year, after I had a nasty cold virus for about a week, I woke up one day feeling a little off. My muscles felt "rubbery", like after a workout, and my vision seemed a bit strange. I shrugged it off as hopefully part of the cold virus, and went to bed that evening. The next morning I woke up with pronounced double vision, and tingling/numbness in my arms and legs, as well as poor gait. Off to the emergency room I went! They did a pretty thorough workup, blood tests, CT scan, and 3T MRI. Thankfully, all came back negative and the doctors were now leaning towards my situation being the Guillain-Barre variant Miller-Fisher syndrome. Looking back now I'm curious as to why they didn't do a spinal tap at the time. Anyway, they wanted to do a "wait and see" and advised me to see my doctor and see a neurologist. After a night in the ER for observation I was released.

All neurologists in this area had at least a two month waiting period and I decided to go with my optometrist's recommendation and see a neuro-ophthamologist (still a 2 month wait). In the first 4 weeks I actually recovered slowly but steadily from the tingling and numbness. I was pretty encouraged, although the double vision did not budge one bit during this time, much to my lament! During this prolonged period of waiting to see the neuro-ophthamologist I was pretty nervous about my situation. I felt like I needed to do something and take some action! So I was researching auto-immune conditions and found that steroids like prednisone seem to be the mainstay of almost all of them. I asked my regular doctor about it and he thought that a short course of steroids would be safe and worth a shot. So I did a 12-day tapering course of Prednisone starting at 60mg. I found this to be a mistake. For one, it made me have increased heart rate and insomnia. But worst of all, when I started the Prednisone I started having new symptoms like jerky movements, and some muscle twitching. I white knuckled it through the 12 days and side effects like the heart rate and insomnia subsided. But the jerky movements and twitching didn't subside and are still here now two months later.

I had kept a pretty good humor about my situation up until this point. Sure I had moments of real despair, but I snapped back and maintained a healthy outlook. But something about making the decision to go on Prednisone and having it make my situation worse just really shook me up, and added a tragic quality to my situation that I'm still feeling. I really regret it. I don't know if the prednisone caused these new symptoms, which I will admit appear to be classic GBS/MFS symptoms, but it sure is a weird coincidence that they popped up right when I started the steroid course. It doesn't help that when I dug deeper on the internet I found that studies on GBS revealed (to the study author's dismay) that steroids either do nothing or they actually delay recovery/cause harm. So naturally I'm wondering if they caused me harm in this regard. My guess is they may have exacerbated the condition and aren't seperate side effects.

On the bright side, a month after the prednisone debacle, my double vision started to slowly resolve and at this time is basically totally restored. Only when I look to the very extreme right or left does my vision start to diverge a bit. Hopefuly this will continue to strengthen even more over time.

So to sum up at this point, I'm about three months and a couple weeks out from when this all started. I'm wondering if the journey is ending here, that what I got now is what I'm gonna have (residuals), or if I can hope for continued recovery. The jerkey movement thing is in nearly every part of my body, and hasn't improved much at all. So it's my primary concern at the moment. Most all the other symptoms showed improvement so I'm curious why this one is so stuck. I'm having health insurance issues so getting to see a neuro and even following up with my neuro-ophthamologist (who wants a spinal tap so that the workup can be complete) is all delayed at this point.

My diet routine is to eat pretty healthy, as many organic foods as possible, lots of fruits and veggies. Plenty of eggs and avacados, which are good for myelin. Supplement-wise, I'm taking a quality 3rd party tested multivitamin every day, magnesium supplement, vitamin-D and methylcobalamin b-12. I'm getting plenty of exercise but not too much and trying to keep my spirits up although I'm finding the more time goes on the harder it gets. Thanks for letting me post here! I'm glad I came across the forum.

Hi Nostromo:

Probably doesn't feel like it but compared to my dear friend with GBS/MFS, you are extremely lucky. Since September, she has been basically in a coma -- just recently was able to open her eyes, move her head and speak. I just visited two days ago and asked her what "new tricks" she had -- she can now move one finger a tiny bit and her right knee twitches a bit. But, other than that, she still cannot move her arms, legs, or torso at all. She goes through several hours of p.t. every day -- cannot hold her new baby (born one week before this disease hit) boy in her arms -- and this is a young woman who ran triathlons last year. Her husband visits for many hours every single day -- has quit his job to be with her.

It's going to be a very long haul for her -- and of course I wish the best to you. My only experience with this virus is through my friend whose situation is so much more severe that it probably cannot help you. But, I joined this site to share experiences and understanding -- it'll be a long time before I completely understand -- but I will be there when she's back on her feet.

I am so sorry to hear about your friend, and the severity of her condition! I imagine both she and her husband are traumatized by this, since this comes on so quickly and out of the blue. Kind of like getting in a car accident. GBS/MFS is very mysterious and insidious. I wish the best for your friend and hope she starts to recover more rapidly.

Nosromo, my neuro tells me that a definitive diagnosis is difficult without a spinal tap. Since Prednisone wasn’t the answer, perhaps IVIG is, and analysis of spinal fluid should give some indication.

Don’t be discouraged by the ups and downs. It sounds like you are trending up, stay strong.

Thanks, Tommy! My neuro-opthamologist tells me the same about the spinal tap. Although he says it's taking so long to get the procedure done that the possibility of a false negative is getting higher and higher.

Hi, my situation is different than yours but I had an bad experience with Predinsone. I work with special needs kids and got scratched on my cheek and it got infected. I was given amoxicillin for the infection but had a severe allergic reaction, I broke out in a rash from head to toe. I was given Prednisone for the rash and from then on felt Iike I was hit by a truck. achy lethargic numb hands and feet. Two weeks of this and then one day I couldn't move my mouth close my eyes or move my face in any way. Eating and sleeping were a challenge. Had to hold my lips closed to drink from a straw and had to tape my eyes closed at night. I could not drive, read a book or use my computer or talk on the phone. On the day this happened I went to the local ER and they did a battery of tests and could not figure it out. They said I should see a Neurologist. The next day my husband called my primary care doc and that afternoon I saw a neurologist he diagnosed me in about 10 minutes. Sent me to a Boston hospital that night for confirming tests and IVIG treatment. I had IVIG for 5 days. went home on Christmas eve 2013. They told me it would take time because nerves take a long time to heal. I was told that GBS stands for getting better slowly. My recovery started off very slowly. One little thing every couple of weeks. It took me a long time to come to grips with that because not moving my face was extremely frustrating to me. By GBS standards from other experiences that I have heard. I consider myself very very LUCKY!!. I was not completely recovered but enough to go back to my job in APRIL 2014 to finish the school years. I am probably about 95% recovered now still have a little tingling in my feet and some issues with my face. These symptoms are only evident to me I am still making progress and do expect to fully recover. There is a light at the end of the tunnel I hope you see it soon

What led to your diagnosis of Miller Fisher Syndrome? Can you recover completely as with regular GBS? I suffered from GBS after a Tetanus vaccine June 2014. I had facial symptoms (double vision, difficulty turning my eyes, facial paresthesia, twitching), as well as ascending numbness and tingling in my legs. After recovering from a sinus infection a month ago (my first infection since experiencing GBS), some of my symptoms seemed to flare back up. This has been quite stressful for me though the symptoms have been much lighter. I especially hate the facial symptoms! I just wonder what everyone's experience has been with facial symptoms then and in recovery.

Hi Tarhealing! I don't have a 100% diagnosis of Miller Fisher Syndrome, and I may never get one because it's taking so long to get a spinal tap. Even then spinal taps are never 100%. But of course if the protein they're looking for IS there then it's 100%, but if it's not that doesn't mean it isn't. You can recovery completely from MFS. My neuro-ophthamalogist is calling my diagnosis "very probable" at this point. I have had all the clinical features. It was post-infectuous, and I had the clinical triad of ophthalmoplegia (double vision), ataxia and areflexia. Also I had a CT scan, and high resolution MRI to rule things out. The ER doctor told me a lot of times it's just a process of exclusion to arrive at the diagnosis. I got another cold a month ago and a stomach bug a week after that. I was very nervous during this time because these were the first times that I got sick again after the initial infection that led to this. Fortunately, nothing happened and I'm still on the path I was. Did your double vision resolve? I hope your recovery continues!

Momofjoy, thanks for your reply! You got to 95% pretty quickly compared to a lot of cases. It still seems like a rough ride but ultimately your story is encouraging!