Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

First post

CWFK
CWFK

Hi, I was diagnosed just this past September with MG after 2 MRIs, a CAT scan, a single fibre test and many many blood tests. My primary symptom is constant double vision (since June 2016). I tried Mestolin for two months (Oct/Nov)  but it didn't help the double vision and I started having slurred speach along with some muscle fatigue. I started Prednisone Dec 1st at 10mg every other day. My neurologist increasted it gradutally to 60mg every other day where it has stayed for 3 weeks. While the slurred speach and muscle weakness is gone, I've had zero improvement in the double vision. It's actually gotten worse; even my prisms don't correct it. I go back in to see my neurologist this Friday.  It's worth noting that I'm negative for almost all of the antibodies they tested for and I don't have thymoma. My question for the group is what else besides increasing the dosage of prednisone can they try for the double vision?

robt111
robt111
My experience was similar to yours. In addition, my Neuro prescribed an IVIG every four weeks. It's the only added treatment that made a difference. However, many Neuros say it should only be used for crisis. Nonetheless, it works for me.
LeaPunkt
LeaPunkt
Hi.

I've been diagnosed acouple of months ago with occular and generalized myasthenia and had to be admitted to the hospital. They put me on mestinon, which did absolutely nothing to better the double vision, and prednisolon and azathioprin, which kind of helped after a few weeks.

I also had to be stabilised for the thymectomy for which they used IVIG for 5 days which definitely helped. I've been told, that sometimes you need more IVIG (immunoglobolin) treatments for multiple months to actually create a benefit.

I would definitely ask for the immunoglobins and azathioprin. For all their side effects those have helped me the most.

Hope that helps.
Lea
CWFK
CWFK
Thanks for the input. I'm not sure what I'm hoping to hear on Friday when I go back in to my neurologist, but I'll be sure to let you know what happens.

hope everyone is feeling well today.
Rhanson
Rhanson
It took me several months at 60mg/day of prednisone for the double vision to go away. Once it was gone, then I could take much less.
whales86
whales86
I had to go on IVIG to keep the double vision under control. I am on a IVIG where I do it at home on my own twice a week. It is a huge struggle with insurance to get it approved but for me it's worth it
CWFK
CWFK
I had my appointment with my neurologist. I'm now taking 80mg every other day (up from 60). Hoping this latest jump makes a difference with my double vision which seems to get worse everyday. Like many, my MG is only showing up in clinical exams (strength tests and double vision) but not in the more objective tests (blood tests, single fiber, etc) so it's still just assumed MG. I feel lucky that my only real symptom is the double vision and randomized muscle weakness but it still impacts every aspect of my life and I'm getting really tired of it. I really can't see unless I have one eye patched and I can't sleep without a sleep aid. I'm trying to patient but this is getting old.