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Living with Polyneuropathy CIDP, GBS, & CMT

One year after diagnosed with Miller Fisher - Update

#1

It has been a year since I’ve been diagnosed with “an incomplete Miller Fishers Syndrome” (MFS) and I want to give an update.

I could say that the diagnose and the symptoms are really accurate. I have fully regained after 3-4 months. I don’t have that tingly feeling on my fingers anymore and I don’t have anymore problem with my balance. So I could say that I’m normal now and could encourage those who just got diagnosed with this syndrome that it is possible to fully recover like me.

I even got a new hobby now which is scuba diving, and since August 2018 I’ve been diving almost every week without any effect relating to MFS which I was diagnosed before.

Cheers to that!

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#2

What helped you get better?

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#3

Congratulations on your recovery! I’m happy for you that you’ve reclaimed your life and can move forward in good spirits.

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#4

Very glad to hear that!!! Enjoy scuba diving! Even though the poly neuropathies change our lives and everyone recovers at a different speed or at a different level, we can all bring something good, something new out of our experiences. Hobbies are one of them. My son, who had GBS with a Miller Fisher variant, recovered after 3 years. I might have to say it was really more than 4 years for no tingling and for his balance to come back. He was 9 years old when this happened, his childhood was interrupted abruptly and he had to start worrying about just being able to do the basic things. Now he just turned 14. My sweet teenage boy now helps kids with disabilities at school and his empathy is so much more developed than it was before. He also picked up a hobby, building model airplanes from the WWII. He wants to bring this hobby to other people with post traumatic stress disorder. I guess we all have post traumatic stress disorder after dealing with poly neuropathies. It’s very traumatic! Building model airplanes helps him focus those eyes that at some point were seeing double, grasping the tweezers with those fingers that he could barely move, balancing that arm that that he could barely hold up…
every little airplane he builds is a monument in my eyes as his mother. I applaud each one of you in this group and keep you all in my thoughts and prayers. One step at a time, one day at a time. Keep it up!

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#5

I don’t have any special treatment aside from the B complex vitamins my doctor gave me. I try to do my daily routine as usual, even try to get back to the gym even though at first I couldn’t lift as heavy as before - need time to be able to balance the barbel while doing the bench. I just try not to really think about the MFS, try not to focus on the tingling, and after a few months I really can’t feel it anymore.

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