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...

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Is it "Normal"

kimo1
kimo1

I was diagnosed with ocular MG about 4 years ago. I've been lucky in the sense that it has never progressed to general. I've been taking 20mg of prednisone the entire time (after stopping Mestinon) and it has held everything in check for the most part except for a little DV with an extreme upward gaze. Most times it wasn't even noticeable and even went away at times. Five days ago, I noticed DV with a downward gaze and not upward along with some eyelid heaviness on the right side. The last two days upon waking, it takes a minute or two for my eyes to work together no matter which way I look (the downward DV remains). Is this type of "flare" something that can be expected? Has anyone experienced this? Is it possible my prednisone refill wasn't as strong as it should be? I refilled my script about 2 weeks ago. Just hoping for a little insight as my mind is running like crazy. Thanks so much

PeterL
PeterL
I can't really help with the specifics as I have generalised MG never had DV. However, 20mg of Prednisone daily for such a long period does seem a lot, it is worth a question or two of your Neurologist. There are others on here who will be better equipped to answer more fully I'm sure.

All the best

Peter
kimo1
kimo1
Thanks, Peter. I chose to use prednisone over the others, for now.
Speechie
Speechie
I had ocular MG for 6 months to a year before it generalized. Despite repeated complaints to my eye doctor, it went undiagnosed until I was diagnosed with generalized MG. I intermittently have DV with right eye lid drooping and on upward eye gaze when tired or driving for too long. Any worsening of symptoms you already have is generally considered a flare or exacerbation as my doc likes to call it. You definitely need to see your Neuro ASAP to make sure that’s what it is and see if meds need adjusted.
You might need to go back on the mestinon. I’ve never been able to function without it. It might not “treat” anything but it sure keeps my muscles working most of the time.
kimo1
kimo1
Thanks, Speechie. I was hoping to hear some feedback from others on what they experience. I appreciate you telling me yours. It does help to hear it.
Rhanson
Rhanson
Sorry MG symptoms are worsening.
My neuro says that taking immune suppression meds (like prednisone) should be done at the lowest level that keeps serious symptoms away with a little Mestinon added as needed for a boost. And she says when we have a flare, we can take more mestinon and hope that gets us through the flare rather than increasing the immune suppression. The immune suppression drug changes work slowly and are not very good for what we think of as flares (i.e. the addition of a cold, flu, stress, etc. to MG).
Most of the time I liked to not take Mestinon, taking more prednisone instead, but did use it occasionally. If it helped, then I thought I might be a little low on the immune suppression level. If it just made me twitchy, I was maybe a little high on the immune suppresson.

Good Luck
Russ
moldyone
moldyone
I have occular MG as well. I do not have noticeable DV but my eye dr said there's enough so that I have prism lenses. Every morning I have the same experience you describe - or even waking from a nap. It takes a while for everything to work together and most days, I just get up with one eye closed. Mestinon has not really helped that but I'm new to it and not up to a theraputic dose.
copperzincbear
copperzincbear
I've had my eyes act up more under stress. I've heard of immune reactions to stress playing a part, but there could also simply be more muscle tension in the eyes along with everywhere else when you are stressed, and the weaker muscles in the eyes have trouble opposing the stronger ones when they are tense under anxiety.