• MG Ask Me Anything

  Diagnosed double-seronegative ocular MG – short episodes years apart, nerve enha

  Posted by Community Member on October 12, 2026 at 1:47 pm

   

  I was diagnosed with double-seronegative ocular MG (37M) by my neurologist, and a second neurologist agreed. I’m on Mestinon 60 mg 3x/day and prednisolone. Sharing my story in case it sounds familiar to anyone. I’m not looking for medical advice, just other people’s experiences.

  My story so far

  – Three episodes, each after fever, heat or fatigue: 2019 (left eyelid droop, gone on its own in ~4 days), 2022 around Covid (double vision ~2 days), and this one in late September (both lids drooping, left worse, plus double vision, a day after a viral fever).

  – Ice pack test and neostigmine test were positive. Mestinon works within 30–40 minutes and wears off before the next dose.

  – AChR and MuSK negative, repetitive nerve stimulation normal, chest CT clear. Extended antibody tests are pending.

  – The unusual part: my MRI showed mild enhancement of both third nerves (the nerves that move the eyes and lift the lids). My neurologist is keeping an eye on it.

  – I was also found to have achalasia (a swallowing condition) and will have POEM surgery soon.

  – My eyes were back to normal within about 10 days of starting treatment.

  I’d love to hear your experience if:

  1. Your ocular episodes cleared within days and came back years later

  2. Your MRI showed cranial nerve enhancement – what did it turn out to be for you?

  3. Your SFEMG was abnormal even when you were symptom-free or on steroids

  4. You have mild ocular MG and went on azathioprine, or chose not to – how has it gone?

   

  Thanks for reading.

  Community Member replied 1 Member · 0 Replies
• 0 Replies

Log In to Reply