My story 8 months on
Hi there,
Long story from me. Work in Neurology so well acquainted with MND.
Symptoms started in October 2025 - legs twitching started in calf’s and progressed upwards to global continuous muscle twitching - all day everyday.
Had MRI’s, EMG/NCS at the time, saw multiple neurologists and even paid to see a specialist private neuromuscular professor. All said I had either benign fasiculation syndrome/chronic fasiculation syndrome/cramp fasiculation syndrome.
Alongside this I had lots of functional symptoms. Swallow felt like it was failing, felt weak. Spent weeks in bed constantly feeling an imminent demise.
I’m now back at work full time, back running again and back enjoying life.
Had repeat NCS/EMG on Monday which again shows no denervation/change since November so very happy with that.
I didn’t believe it at the time but things will get better, it’s not an overnight fix, it won’t take days or weeks it’ll take months. This awful syndrome can be managed and life can go on.