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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redheadnoz 04/17/2016

Hello,
So my left eye has been closed now for 9 days! This is the longest it has ever been! I am still not on meds but they suspect that I have myasthenia gravis.
So can anyone tell me is this unusual that my eye has been closed this long or is that normal with myasthenia gravis?
Any help would be greatly appreciated. It just makes one nervous because it's not only effecting my eye but it feels like it is pulling the whole side of my face down as well! A little scary!
Thank you!

xmas25 04/17/2016

No experience with closed eyes mine just go 1/2 way down at 6pm.in summer when I'm out in heat I use an ice pack or cold washcloths .have you spoken to dr-mine uses cold packs on leg and cold cold drinks for speech difficulties even after 9 yrs. He documents the improvement since I'm negative bloodwork. Maybe you could take pre cold pic and post cold if it works to show dr. Hope it clears soon

Rhanson 04/17/2016

Mine varied, usually ok in the morning and worse as the day went on. Mestinon helped keep it open. Yours sounds much more drastic and unlike what I have head about MG from others or my reading.

Find a different eye specialist and neurologistif they don't treat you and yet insist it is MG.

I had some problems with Bell's palsy some years ago and that was one side of my face having problems.
Good Luck

HappyGuy007 04/18/2016

You may try an ice pack over the eye to see if it relieves symptom. This is a type of diagnostic test for MG... Have your Drs. considered a trial dose of Mestinon?

jessicadrummond 04/18/2016

Never had my eye closed, just drooping. Hope they can pinpoint the cause! Any other symptoms? Slurred speech? Trouble sucking through a straw?

Barbel 04/18/2016

My eye issues include both eyes shutting for a maximum of 45 minutes before I was dx. Mestinon really helps with this problem. MG is progressive without treatment; please be careful.

photobug60 04/18/2016

I'd say it's time to get out of the "they suspect" stage and get an AchR antibody blood test. You also need to rule out other possibilities. Please see a GP and a neurologist.

nnyguy1960 04/18/2016

Why is there hesitation to perform an AchR anti-body test? I had this test and the musk test performed the first time I went to the emergency room at University of Vermont medical center. They had the test interpreted at the Mayo Clinic, and I had my diagnosis. I feel so bad for people whose diagnosis gets dragged on for long periods of time.

redheadnoz 04/18/2016

I actually have had the AChR but it was negative. Neuro Opthamologist put me on mestinon for about a month but it made symptoms worse so he took me off. Now waiting to get in for EMG May 17.
I never thought about ice on my eye I might try that. Of course, I've been dealing with some stress so I'm sure that is adding to the problem.
Gosh! Thanks everyone for responding!,

xmas25 04/19/2016

I think it's expensive and results are questionable/not reliable. Drs even with negative results treat based on symptoms .insurance in some cases need to pre-approve test due to cost.

redheadnoz 04/19/2016

JessicaDr the only other symptoms I'm experiencing is extreme fatigue (I sleep 12 hours per day), sometimes I can't hold my head up & it falls to my chest, occasionally weakness in arms & jelly legs. Fortunately I have not had problems with slurred speech, with eating, choking or breathing as many of you have experienced.
I am so thankful I have found this group so I have someone to talk to! That understands!
Thank you!

xmas25 04/19/2016

Is your eye still closed? Remember if you develop any other frightening /life threatening go to er . Maybe they will give you a more thorough workup especially if large or university hospital.

redheadnoz 04/23/2016

xmas25-As of today my eye is still closed & some days my other eye is closed too where I am only looking through a slit. I do not get up & do a lot on those days. Lately I've been experiencing a thick tongue. Have you ever had that? It's hard to swallow when it's like that. It woke me up this morning.
Thanks for checking back in on me & reminding me to go to the er if frightening/life threatening. Almost thought about it this morning!!

limpnoodle 04/24/2016

Have they checked for Lems? All my mg tests were negative, but I was positive for lems after six months and a repeat test. I used to wake up with one eye closed and the other one normal.
I'd go about my normal routine, and about five to ten minutes later, the eye would pop open.

redheadnoz 04/25/2016

No, I haven't been checked for Lem's yet. I just began this journey May of 2015 & can't believe how unbelievably slow a process this is just to get a name for the symptoms your experiencing & a treatment plan.

On a lighter note, MY EYES ARE FINALLY OPEN!!! That was the longest they have ever stayed closed 16 days, before it's been 4 days.

Celebrating the good things!

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