I’m a little late to this thread, but I wanted to share my experience out of empathy. This year has been an absolute medical curveball.

I turned 41 in October, and, humbly, less than a year ago, I was in elite shape. At 40, I ran a marathon in 2 hours and 40 minutes. But everything started to change after an inguinal hernia surgery in the spring. I began experiencing random twitching in various parts of my body—frequent enough to be distracting. By July, things had escalated. The twitching became more intense, and I started feeling seriously "off."

One morning, despite not feeling great (twitching, cold lower legs, nerve pain), I decided to swim in the pool, hoping exercise would help. That evening, everything fell apart. I could barely walk, and I was hit with a wave of neurological symptoms so severe I was bedbound for nearly three weeks. It was terrifying.

Since then, I’ve slowly recovered, but I still struggle daily. My main symptoms include:

Constant fasciculations: Especially in my calves, but they occur all over my body.
Nerve irritation and muscle discomfort: Mostly in my lower legs, hands, quads, and jaw.
Fatigue: My jaw weakness is particularly bothersome—it often signals that the other symptoms are about to flare up worse.
I’ve had extensive testing: EMG nerve and muscle studies, MRIs of my spine and brain. Shockingly, everything came back clean. I was convinced I had ALS or MS, but my neurologist reassured me there’s no sign of a neurological disease. He called my condition benign, though the symptoms are anything but. He plans to repeat the EMG in January to confirm.

As for treatment, I’ve tried several options:

Xanax: Helps calm my nerves, particularly in the afternoons.
Baclofen and Gabapentin: Provide some relief and help me sleep, but I still deal with uncomfortable symptoms daily.
Supplements and functional wellness: I’m working with a functional wellness doctor and taking various supplements, which has been part of my approach.
Therapy: I’m working with a therapist to address medical anxiety, which has been helpful.
I’ve started exercising again, but I’m nowhere near where I used to be. While I haven’t lost strength, my endurance is way down. If I push myself too hard, my symptoms flare up—it’s just not worth it.

Looking back, I suspect I pushed my body to its limit. Between marathon training, raising young boys, and traveling for work, I likely compromised my immune system. My neurologist believes something viral, like Epstein-Barr or mono, triggered this, affecting my nervous system. While he reassures me it’s benign, I still fear the possibility of a neurological disease.

On the bright side, this experience has taught me to slow down and focus on what truly matters. It’s even strengthened my 15-year marriage. For a while, when things were at their worst in August, my wife and I thought I was facing my mortality, which brought us closer together.

I’m considering a visit to the Mayo Clinic to see if they can provide additional insight. Selfishly, all I want is to feel normal again. This journey has been brutal, but I’m learning to manage it.

For anyone else going through something similar, I’m with you. It’s so frustrating to explain these kinds of symptoms—especially when you look fine on the outside but feel like a battle is raging inside.

Much love to everyone here, and I hope you all find relief.