Post Miller Fisher

Yes! I too had MF GBS in March of 2003.  I’ve been dealing with residuals which include numbness pains, I have drop foot and walk with a foot brace.  I still have a lot of nerve damage as I wasn’t diagnosed correctly right away.

Do you use a cane or walker?  How about physical therapy?  I’m in swim therapy, been for the past 5yrs now. The warm water is great and being able to move about is fun and helps with the residuals.

Many here at the foundation recommended the swim therapy and I’m really glad I’ve been going. It’s been a long road on March 24th I’ll be celebrating my birthday and 10yrs from my onset of MF GBS, lots of people say some birthday present, lol!  I keep positive stay strong and never ever give up! No matter what I enjoy life and keep in mind the 3 L’s Live Love and Laugh!!

Keep smiling, stay strong 🙂

I contracted Miller Fisher in March of 2013, and was teaching 4th grade, my 27th year in the classroom, in fact. My residuals kept me from going back for the rest of the school year. After taking a year off, my doctor pronounced me disabled, and I resigned. This was huge for me, for I had been teaching my entire adult life, and loved it. GBS was truly a “forced pause” and it took my life to an entirely new direction. With chronic fatigue, soreness, balance issues, and double vision which did not go away by itself, I was living in an entirely different body, it seemed. After having surgery to correct my vision, I began teaching piano lessons in my own home. I learned I could indeed do this and rather enjoyed it. And, now, some 13 years later, I have 30 students and believe I’ve found what I truly love doing at this stage in my life, at 62. A strange turn of events, which I would not wish on anybody, turned out to be a blessing. We simply cannot see what lies ahead, only the present moment. By the grace of God, if I can hold out open hands each morning, and take each day as a gift even though handicapped, joy does come.

I was diagnosed with MFS in 2009 after having first been taken down by GBS/CIDP in 2008. The MFS variant paralyzed the right side of my face. I could not close my right eye, I could not open the right side of my mouth, when I tried to smile only the left side of my mouth moved, I had difficulty eating, speaking, and my vision became so blurred the doctors declared me legally blind.

Today, 5 years later, I can close my right eye (mostly), I now smile from both sides of my mouth (a little less widely on the right side), I have no problems eating, surgery restored my vision, and my speech is much clearer (still a little slurred though). The right side of my face still remains slightly numb and itchy.

I am thankful for the recovery I have had from MFS, even if it is not yet close to 100% … any improvement is welcome! I wish I had the same level of improvement from CIDP, but it appears I am going to be a paraplegic the rest of my life. Thank god for power wheelchairs, without one I would not be able to get out and around town, and that freedom to travel helps me remain hopeful.

Jim-LA

Your’s is an amazing story, Jim, thanks for sharing. It is quite an adjustment, getting used to all of the alterations and residuals of MFS. Having the vestibular system on my entire right side taken out, I was a heck of a balance study for some time. By the grace of God, however, I now go from day to day, albeit handicapped, easily motion-dizzied, and fatigued, doing and enjoying what I’m able. The whole experience has made me a far more grateful person, with a life-rhythm that is so much simpler, enabling me to be in the moment more now than I ever was before. It sounds like you’ve reached a level of contentment too, you now being mobile and traveling, like you say. There is a certain bitter-sweetness to it all, for me. On one hand, I’d never wish GBS on anybody, yet, it can be that “forced pause” that wakes us up to the things that really matter in these short lives of our’s. Again, appreciate your account!

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?

Hi, Roddy,

The issue I had with my MFS was primarily double vision and balance. The vision component lasted for a year with no improvement. Corrective surgery followed, and this was greatly improved. The inner ear nerve damage, along with fatigue and limited vision, combined to make returning to the classroom an impossibility. My MFS never evolved, thankfully, to full blown GBS with numbness or pain in the extremities.

All symptoms have gotten better over time, including my balance. With piano, it was largely the balance and eyesight that curbed even my playing/reading skills, as you mention with your fingers and guitar-playing. This, too, improved well enough for me to slow down my pace a bit, and concentrate on improving my basics. This was a good thing, actually! Over time, I found I was able to teach piano and thoroughly enjoy it, and my own skills have recovered. My students, to this day, appreciate my relaxed, patient style of instruction, which I owe to the MFS. I think I now enjoy my 30+ students one at a time, more than I ever did with all of them in the same classroom at one time.

Please know there is a future and hope with your neuropathies, and your fingers will regain dexterity in due time. It’s a long cruise, but know you are healing.

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.

Thanks,
Roddy

My 10 year old son was diagnosed with Miller Fisher back in November 2016. He was treated with IVIG and did physical therapy. His vision is back to normal but his pupils still don’t dialate. His muscles ache and some days he is extremely tired. I am constanly asking him how he feels, what aches and what is his energy level. I don’t want to nag him but I want to make sure he feels comfortable. Is there a specific diet he should be on? I’ve asked his doctors if there are vitamins or foods I should be feeding him and they tell me no to wait and it takes time. I just want to make sure I am doing everything possible for a great recovery. He is a courageous little guy who doesn’t give up with a great sense of humor.

My suggestion is to stop asking him about it and just give him a normal diet. With MFS the fatigue is normal. Also once in a while I still feel a bit wobbly. Teach him to be well, not sick. Make sure he has sunglasses for out doors. His normal just means he needs to take rest breaks during the day. But he is normal. Life with MFS should just be a continuation of rehab. Excercises, rest, school, play.

I was diagnosed with Guillain Barre Syndrome at age eight. I am assuming it was the Miller Fischer variant (I don’t really remember and my family has since passed on). It started with double vision, like many others. I still get double vision when tired and I definitely have some balance problems. I also have been diagnosed with CIDP now, so it is hard to tell the two apart sometimes. It gets very frustrating.

I also cannot read things sometimes, I don’t really know how to explain it. But if I am trying to read my phone sometimes I have to close one eye. It’s so strange! I feel like it’s definitely a residual from the MFS because I had to wear an eye patch when I had the MFS as a kid to correct the double vision.

Good luck to everyone dealing with residuals!

Thank you all for the recommendations, we will definitely look at the proposals at our leisure.