@davidjs Hi, my husband who is 37,had a 5 day fever with severe tonsils & chest congestion in April 2025. Post which the ent checked his tongue in may 2025 to find fasciculations - the nuro did contrast ct of brain,spine but didnt see anything. the myasthenia gravis, musk antibody & other nuro bloodwork like GAD 65 came negative repeatedly. He was unable to speak & had very restricted tongue movement when i took him to ENT in may 2025, its only in march 2026 that the doctors gave him one round of ivig as a wild shot when a lot of neurologists had said he mostly had a bulbar onset MND. They even put him on rulvitor for a week, post which i asked him to stop it as he was super drowsy the whole day. The ivig worked amazingly on him & his gag reflex came back & his swallowing & tongue movement improved a little. And only now in april 2026 a new nuro that we went to though about testing him for NF 140/155/186 & thank fully his NF 140 is positive - though the sub class result is still pending.
Just yesterday his round 2 of 5 day ivig has finished along with the 2 vials of Rituximab in iv.
I showed him to some of the most renowned neurologists across the country in the last 1 year & only now did a doctor for teh first time decide to test him on NF. It has made me realize how rare is it tested for & how the emg can show it as an anterior horn cell diseases when the person actually may be NF positive