Reply To: Seronegative myasthenia gravis: share your experience

[Community Member]

Hi – this is long, but I actually have a question at the end, in case anyone wants to just skip to that.

I am seronegative and started with ocular myasthenia. Fortunately, I started with a neurologist that specializes in MG. He did a trial of Mestinon which improved the double vision and there was no hesitancy about Ocular Myasthenia diagnosis. Eventually Ocular became generalized. My single fiber Emg was normal. Like some of you have mentioned, I have doubted at times if I really have generalized MG. I guess the choking episodes and swallowing difficulties are the things that made me stop wondering if I really have generalized MG.

I currently take Imuran (generic azathioprine), 90 mg Mestinon (generic) 3 or 4 times a day. I have a huge amount of prisms in my glasses (started with less but it keeps progressing). When the choking started happening more frequently, I started IVIG (gammaked) which I now get once a week.

My question for you all: has anyone that is seronegative and normal emg been able to get insurance to cover Vyvgart or any of the others: ultomiris or rituximab? I want to be able to travel some but with infusions every week it’s not possible to go for any length of time. My neuro says it’s very hard to get insurance approval for seronegative patients.

Thanks for any insight!

Karen