droopy eye and weak voice.Posted by bertie on January 31, 2024 at 3:38 pm
I have had MG for ten years and am taking 1/2 mestinon three times a day. I have tried some other treatments, but they had side effects. I have two main problems. My voice is getting weaker but varies from day to day. At times, it’s hard to be understood. Also, my left eye used to come down and almost coves my pupil by the end of the day, but now it starts in the morning. It is getting hard to drive. My opthomologist suggested surgery, but my neurologist said it will be back down in a couple years. Can anyone help?
ModeratorFebruary 17, 2024 at 2:37 pm
Hey! Do you take a slow release mestinon before bed? If not, I suggest discussing that with your doctor. It may help with the symptoms you are now experiencing in the morning. You may be interested in this discussion: https://myastheniagravisnews.com/forums/forums/topic/have-you-had-eye-surgery-to-help-your-vision/
-Jodi, Team Member
MemberFebruary 28, 2024 at 2:11 pm
I take this and it has been so helpful.
MemberFebruary 24, 2024 at 7:37 pm
Yes definitely ask your doctor about taking mestinon slow release at bedtime. You might ask about increasing your daily dose also. I take 90 MG of mestinon three times a day and 180 MG of mestinon slow release at bedtime. I used to have the problems you’ve described as well as difficulty, swallowing, and bouts of double vision but since starting this regimen of mestinon, I’ve had no symptoms.
MemberFebruary 28, 2024 at 2:21 pm
I take 180mg Extended Release 2 time a day and it corrected my droopy eye.
MemberFebruary 28, 2024 at 2:24 pm
Your dosage seems low to me. I experienced similar symptoms until I reached 90mg four times daily. Everyone is different, and dosages can be adjusted up or down as needed, at least in my experience. My first neurologist balked at more then 3 pills per day, but once I convinced him it was needed, and we made the change, my symptoms subsided. Current neurologist, who is one of the best for MG, has no issue with my dosage. Definitely try the slow release overnight. If all else fails, there’s always prednisone, although I hate the side effects. Good luck
MemberFebruary 28, 2024 at 3:04 pm
Definitely speak to your doc about the extended release meds discussed. It work wonders!!!!
MemberFebruary 28, 2024 at 3:04 pm
Those of you taking the ER mestinon, are the gastric side effects as bad?
MemberFebruary 28, 2024 at 3:05 pm
And your dosage seems really low to me also. I’m on 2 60mg daily and 2 180mg extended release daily
MemberFebruary 28, 2024 at 3:24 pm
Hi I have MG for 5 yrs and in 2022 , I got vocal cord paralysis due to mg.
Taking 60 mg mestoni. 4 times a day and my voice gets weak by afternoon.
Can anyone help me in any way also my eyes were droopy but that improved a little, but my voice is so bad is that I am afraid to speak and I don’t have the range.
MemberFebruary 28, 2024 at 8:21 pm
Not only do I have a droopy eye – I also have a right/side droopy and floppy face. It’s very noticeable and mestinon no longer works.. I did do prednisone for 8 years which helped some but stopped many years ago when pregnant. One neuro said I should get a face lift. Anyway, I have a appt with a new neurologist but it’s in 6 months. Crazy long time to wait. I also have trouble swallowing..
MemberFebruary 29, 2024 at 7:37 am
For about a year I had both my eyes taped open everyday with strip said normally hold cuts closed. I’ve had multiple infusions of multiple drugs. (10 times) Nothing work to help my eyes. After a year doing this I went forward with surgery. They actually used a muscle from my forehead to attach to open my eyes. They are open everyday and 100% naturally looking. Once you go this route there is no turning back so make sure it’s for you first. I have virtually no other symptoms of MG although I do have GMG not ocular mg.
MemberFebruary 29, 2024 at 10:33 am
Wow, congrats, that’s some procedure and glad its worked out well. Wonderful.
MemberFebruary 29, 2024 at 5:39 pm
I so envy most of you. My MG, plus Degenerative DIsc Disease ad Fibromyalgia were all caused because my DNA was altered before birth from my father drinking Camp LeJeune’s poisonous water for 18-months in 1953-54 (diagnosed & it killed him at 79 from kidney cancer/failure). Mestinon and two other MG specific meds either did nothing or made me worse. Not one new med helped me since 2009! I too have the droopy eyelids and weak voice at times, usually from talking too much. All of us have weakened muscles from the neck up.
I went to my 2-dozenth+ Neurologist yesterday at Mount Sinai in Manhattan (supposedly the best MG hospital now). Three different muscle/nerve tests were done that got my pain everywhere to 10/10 until a few hours ago. The guy who first did a super jacked up TENS type unit test on most muscles whispered to the doctor “There’s significant nerve conduction loss in most muscles.”. She was testing the strength of my muscles at the time and said “I KNOW”.
I made a detailed list of ALL my lifelong weird symptoms (most are telltale MG symptoms), meds that do/don’t work, the fact that I haven’t had a cold/flu since 2008+++, she didn’t even look at it, nor made a copy for my chart??? Then she says “You have quite severe Neuropathy in major nerve from your diabetes (that only started in 2012 & I’ve never been overweight), but you definitely don’t have MYASTHENIA GRAVIS???” But didn’t have one word to say as to why. WTH…
Just another run of the mill Neurologist who may know some MG basics, but that’s where her knowledge ends- she was guessing based on her limited knowledge. SHE WASN’T THE FIRST TO SAY IT’S NOT MG, BUT THEY COULDN’T SAY WHY EITHER! Three of the absolute best Neuro docs I’ve seen from 2003-2012 were sure I have MG and explained exactly WHY I have MG. Then there’s the literally several hundred hours I spent researching MG all over the net since 2006 & all over the world (Northern Europe knows far more than US docs!) I’m 99.9% certain I have MG.
At least they finally did extensive DNA tests with (12) vials of blood. Hopefully I’ll get some answers there in 3-4 weeks…
MemberMarch 1, 2024 at 1:51 pm
I had the left eye drooping and my VA doctor operated on it and lifted it. It is better.
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