droopy eye and weak voice.

[Jodi Enders]

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

[Jan]

I take this and it has been so helpful.

[George Kesterson]

I take one at bed time and 1 one in the morning. Have been doing so for 5+ years.

[Gary]

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.

[James Fabry]

I take 180mg Extended Release 2 time a day and it corrected my droopy eye.

[Robert Ballentine]

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

[Keith Wilson]

Definitely speak to your doc about the extended release meds discussed. It work wonders!!!!

[TheresaG]

Those of you taking the ER mestinon, are the gastric side effects as bad?

[standia]

I recently switched from 60mg 3x daily to 1 – 180 mg ER every morning. I like this new regimen very much and have not experienced any additional gastric issues from the ER dose. Before swithching to ER i would occasionally forget to take a pill during the day and even when I did not forget any my symptom were not as stable thruout the day.

[Keith Wilson]

And your dosage seems really low to me also. I’m on 2 60mg daily and 2 180mg extended release daily

[Ramkoomarie Gajraj]

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.

Thanks

[Tina]

Same with my voice. I used to sing. Now can’t get a line out. Going for speech therapy soon

[Gina]

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..

[matt-sereby]

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.

[John]

Wow, congrats, that’s some procedure and glad its worked out well. Wonderful.

[James McCay]

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…

[Barry]

Have your neurologist do a Tesilon Test. It is definitive for MG.

My Neuro did it, and for 20 minutes I was cured. After that I was back to bed until the IVIG and Mestinon started to work.

Now I am also on Azothioprine. I get speech slurring and eye drooping occasionally and get tired easily, but I am not in remission yet. Its a long struggle.

[Tina]

Blood test results showing antibodies are the best diagnosis tool for MG if you can get that piece of paper from the lab. It ends all arguments with the medical establishment. Of course, that doesn’t mean you’re going to get the right treatment. And even when you do, it’s not like the MG is going away or the treatment will stay effective. MG is a marathon and a frustrating one at that. You’ll need to steel yourself for it, emotionally and spiritually. I’ve got over 15 medical diagnosis on paper, including some of the ones you state, and it’s overwhelming for some of my doctors. When I go to a new one for a second or third opinion on something, they actually think I’m “faking it”, as two new ones said, “no one could have that much wrong with them“. Another said, “I don’t wanna get lost in the weeds“. So I don’t refer to any except the issue at hand. Anyway, sorry for sounding glum but it’s another one of my down MG days. In a nutshell, try to get your diagnosis on paper, shop around for the best MG neurologist or movement disorder specialist that handles MG, involve yourself in the online groups to avoid overwhelming friends and family, and calmly advocate for yourself with doctors and insurance companies. After you’ve done all that, then you actually get to enjoy your day while trying not to create a flare. Try to find time for a hobby or two that you can enjoy to take your mind off of all this guff.

[paul spychalski]

I had the left eye drooping and my VA doctor operated on it and lifted it. It is better.

Good luck

[JACK FLAUGH]

I was diagnosed in 2010- I have had droopy eye, total voice box failure and unable to speak-along with many muscle weakness issues all many kinds. After many, many different types of treatments (too many to list), I now have my MG in a manageable state. I do VVGART 4weekly injections -4 weeks off and then 4 weeks on. This does not full sustain my situation and I take 60mg of Mestinon (Generic) 4 times a day. I still get muscle weakness symptoms of and on-but I am relatively stable currently.

[James McCay]

BARRY- I HAD A TENSILON TEST MANY YEARS (2007) AGO AND IT WAS POSITIVE. GLAD I HAD IT THEN, THEY DON’T DO THIS TEST ANYMORE IN THE US! FROM WIKIPEDIA “The test has fallen out of use due to suboptimal sensitivity and specificity as well as associated adverse risks.<sup style=”font-family: inherit; color: var(–bb-body-text-color);”>[2]</sup> Edrophonium is no longer available in the United States and many other countries as of 2018.<sup style=”font-family: inherit; color: var(–bb-body-text-color);”>[“</sup> I VETTED THIS INFO AS CORRECT MYSELF.

I JUST WENT TO MOUNT SINAI NEUROLOGY CLINIC 3-DAYS AGO (SUPPOSEDLY THE BEST MG DOCS IN NY STATE IF NOT THE WHOLE EAST COAST ACCORDING TO SOME). THEY HAD 2-MONTHS TO GET MY MEDICAL RECORDS, BUT DIDN’T HAVE ANY??? I TYPED OUT 4-PAGES OF DETAILED MEDICAL HISTORY, MEDS, SYMPTOMS+++. THEY DIDN’T READ IT, OR COPY IT, AND HANDED IT BACK TO ME WHEN I WAS LEAVING. I MADE IT FOR THEM TO KEEP!!!

THEY DID THREE TESTS ON ME (EMG, MUSCLE PUSHING/PULLING, & SUPER CHARGED TENS LIKE MUSCLE TESTS) ALL CAUSING INDESCRIBABLE PAIN THAT I STILL HAVE. THE FEMALE 30-ISH DOCTOR SAID “YOU DEFINITELY DON’T HAVE MG.” ON MY 1ST VISIT THERE EVER. THIS IS CRAZY BECAUSE I DEFINITELY KNOW I HAVE MG AS DO THE 3 BEST NEUROLOGISTS I EVER SAW! THIS DOC ASKED ME THREE TIMES IF MY BLURRY VISION IS DOUBLE VISION. I FOUND MANY UNDERTRAINED NEURO DOCS THINK IT MUST BE DOUBLE VISION TO BE MG. NOT TRUE!! HE TRIED TO BLAME ALL MY MG SYMPTOMS ON MY VERY ATYPCAL DIABETES THAT ONLY STARTED IN 2012; SEVERAL MG SYMPTOMS I HAD ALL MY LIFE??? SHE HAD NO CLUE!

en.wikipedia.org

Tensilon test - Wikipedia

Tensilon test - Wikipedia

[Skp]

I drove to Rochester MN, the neurologist at Mayo did a tenlison test on me too and said that I didn’t have MG, but did have positive streated muscle and I still don’t know what that means. My eyelids droop at will, I have difficulty swallowing and chewing, my muscles get very tight in my face then start to tingle sometimes. Also have balance issues.. My family dr said that she thought I had Double Sero Negative MG, because my blood tests were negative. Then she wanted me to go to a neurologist in Sioux Falls, and she told me that there is no way I could have MG because it is so rare.

I am not sure what to do either. We don’t have any other specialist locally.

[Barry]

I know you probably will not travel, but the University of Miami (FL) Jackson Memorial Hospital has a neurology clinic that has a few MG specialists.

[John]

I go just around the corner there to Desai Sethi Medical centre where there is one of the best Neurologists in the Country who specializes in MG and this person has been fantastic if you need a rec just PM me.

https://umiamihealth.org/locations/desai-sethi-medical-center

umiamihealth.org

Desai Sethi Medical Center

Desai Sethi Medical Center

[Skp]

Thank you, I will consider it because we do have a relative in Florida we could also go visit.

But currently, My husband is having some other issues so we are grounded for awhile.

Thanks you though.

[James McCay]

FIGURES WITH MY LUCK. THIS ALL STARTED FOR ME IN FLORIDA IN LATE 2001- THEY TOLD ME TO GO BACK TO NY IN 2002! NOW I’M STUCK IN NYC, HOMEBOUND/BEDRIDDEN WITH NO FAMILY. I’M “LIVING” ON $17K A YEAR IN SSD. I’LL NEVER SEE FL AGAIN…

[Skp]

Dear James,

I am so sorry to hear about your problems. I don’t know how old you are or if you have a military background. If you did, the American Legion might help you get to Florida. I know that they have given bus tickets to military people who wanted to travel home. Or the VFW-

there might be other organizations that might be able to help you too. Is it possible to have a Health Care Advocate to help you locate some help?

[Genevieve]

As someone who is entering my 3rd decade of MG living (it developed early in my college years), my experienced observation is that your myasthenia is progressing. After 10 years that is common, but you are on the very lowest dose of Mestinon which is prescribed. It is time for a new checkup with your neurologist- and I would verify at this point that your dr is a neuro-muscular specialist. If they are not specialized, it is time to find one. You will get through this, and regain your strength again- there are so many more treatment options now than a decade ago!

[James McCay]

SKP- I appreciate your suggestions. But I’m way too physically disabled to travel anywhere. I’ve been legally homebound/mostly bedridden since 2009 with no family or friends left.

As far as Advocates; so many of the doctors left don’t even accept anything but private insurance and cash. I’m stuck here like it or not.

[Tina]

That’s my main symptoms. Gets progressively worse. Diagnosed 6 years ago. Just had the Mestinon generic tripled from 30mg 3x day to 60mg 3x day with a new doctor’s second opinion. Symptoms a little better but I can tell eventually the new rx won’t be enough as they’re still progressing. Not sure what I’d do next. Symptoms never really go away, just fade at certain times of day. Try a second opinion