u/Correct-Eggplant2402

I’d like to share my experience with Miller Fisher syndrome in case anyone has advice, especially about two issues that still worry me a year and a half later.

It all started after several days of diarrhea. I began to feel better, but one morning when I woke up, I couldn’t focus my vision. It didn’t improve throughout the day, so I went to the ER. They referred me to a specialist, but by the next day my vision had become double, and I started to feel unsteady.

I went back to the ER, and they ran multiple tests, but nothing showed up. The following day (a Saturday), my vision got much worse, so I went to an ophthalmology emergency clinic. They told me it could be something more serious and sent me to a hospital for further testing.

After several days and many tests, I was diagnosed with Miller Fisher syndrome.

During my hospital stay, I lost strength in my hands—I couldn’t even open a bottle of water—and walking became difficult. I stayed there for 13 days. In the last 5 days, I received daily treatment (IV therapy). After that, my hands slowly started to regain movement and flexibility.

I was discharged and continued recovering at home for about two months. However, I lost around 7 kilos (about 15 lbs), and I could literally see my muscles disappearing. I also wasn’t able to have any sexual function.

I was 45 at the time, a healthy man with a slim build and a very active lifestyle due to my work.

After about 6 months, my vision returned to normal. Around the one-year mark, I felt like my energy had mostly come back. But my muscle mass hasn’t, and I still get tired very easily. Trying to exercise is difficult because the fatigue is intense.

My sexual function hasn’t improved either. I’ve seen a urologist and tried some medications, which help, but it’s not the same as before.

My questions are:
If you’ve experienced this, what helped with fatigue and sexual function during recovery?

I’d really appreciate hearing about your experiences. Thank you.