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Living with Polyneuropathy CIDP, GBS, & CMT

Diagnosed with Miller Fisher Syndrome

My name is Daru, 31 years old, from Jakarta, Indonesia.

On the first week of February 2018 I woke up with a tingly feeling on both my hands and feet. I just thought that I was just tired because of all the overtime that I have to do at my office for the past two weeks, including on the weekends.

I tried to ignore the feeling, I still go to the gym lifting weights like I do every week. The tingly feeling won’t go away.

Finally, I had a long weekend where I could rest fully. I slept for 3 days in a row, only waking up to eat and going to the bathroom. After 3 days of bed rest, the tingly feeling still won’t go away. It got even worse. I lost my balance, almost fell a couple of times while walking down the stairs. And the thing that really annoyed me was that one of my eyelid couldn’t open fully. This made me panic.

The next day I went straight to the neurologist. He checked on my reflexes which I found out that I lost all of it. He asked me whether I had some flu symptoms or sore throat or any sickness the week before - which I did, and it took a long time to cure because I had no rest. He made me do an EMG test and discussed my condition with his fellow neurologist and found out that I have “an incomplete Miller Fishers Syndrome” (MFS).

This really made me sad since I’m the kind of person who eats healthy, goes to the gym often, with an athletic body, but I have to deal with this kind of syndrome.

Fortunately just after three weeks I regained my balance and my eyelid could open fully like before. But until now (almost the second week of March) the tingly feeling still won’t go away. If it is really MFS I guess I still have to live with this condition for 3-4 months maybe. This really annoys me since I’ve lost sensitivity to all my fingers, I couldn’t play the guitar that well anymore (I play the classical guitar), I couldn’t feel the smoothness of paint anymore (I love to detail cars), and even my handwriting becomes funny.

Just wanna share. Or I’d appreciate if there are tips for coping with my condition.

Thanks.

Hi Daru, I had Miller Fisher Syndrome almost 4 years ago now following a Tetanus shot. Before this happened to me, I ate healthy, worked out with weights regularly several times a week and was a long distance runner. I was running 6 miles a day several days a week with hopes of running another marathon so I was physically fit. I also had the tingling feeling, difficulty with one of my eyes, and balance issues. I understand how frustrating this can be.

Good news is that nerves regenerate and being so fit prior to this is helpful with recovery. I found that I had to be forgiving of myself for what I could not do and thankful that I could still do what I could. When I tried to look for the positives, then I found that I started doing better. I know that is hard to do and that was a work in progress for me. The steps forward were great but the steps back were tough but that seems to be how this thing works so take in stride and keep moving forward.

As you heal, you may regain much of or all of what you could do before. That’s been the case for me. I have run races again but not longer than 5ks because the distance seems to be harder for my body to recover but I’m definitely ok with that. I can still go to the gym and workout with weights. I know that I’m lucky.

Hopefully, you will continue to regain the sensitivity to your fingers. Don’t give up. I kept slowly trying to do what I did before and you may discover new ways. Eventually the majority of that tingling went away for me but I still have a little especially after a lot of activity. Someone told me that’s it’s good if you are feeling things though, much better than not.

Reaching out on this site really helped me get through the tough times! Good luck with recovery and reach out anytime!

Are there any kind of supplements or vitamins that could help the recovery?