Anyone been treated at Mayo Clinic for Ocular Myasthenia Gravis?

I never had the diarrhea or stomach issues. They prescribed a Prilosec type drug that I could take if that was an issue.
Yeah, I have a tag I carry on my purse probably safer to have a bracelet, but I don't do that. I know there are certain anesthetics and and antibiotics we cannot handle if we have Myasthenia gravis.
Thanks for your story

Had tests for ocular myasthenia Gravis and they were negative per local doctor consultation with Mayo. Dr still thinks I have ocular MG . So had tests done for 2nd opinion at a different medical school. They said not likely. Now 18 months later I still am being told by my local PCP and local optometrist that my eyelid drooping, inability to focus at times, along with swallow difficulties and imbalance when ambulating are strong signs of ocular MG. What can I do to find out? I live in a rural community with limited resources and so have to go 100 miles or so to find a Dr. for this.

@retiredx3 If you’re having trouble finding a specialist for OMG, you could call GARD-the genetics and rare diseases organization: https://rarediseases.info.nih.gov/ or NORD- https://rarediseases.org/. the National Organization for Rare Disorders. Both groups keep lists of doctors who may be able to help. Let me know if you have any success!

Forgot to mention I have never been treated at Mayo Clinic. Thanks for the reminder about certain medications etc. we cannot take. I forget about those things and they could be an issue. Also, I will ask my neurologist next visit about the Prilosec you mentioned to help curb the diarrhea. Thanks for the info. Keep your tag on your purse & think about a bracelet. They have so many on line. You will take days to make up your mind which to purchase or maybe several for different outfits & occasions. Trust me I am still looking for one. Bit of old lady advise, Better to have it and not need it Than not have it and need it. My best to you Boomerang12

I’ve been on prednisone for 7 months, between 10&15mgs. Still having issues. Cellcept on deck. It’s amazing that there’s actually other people having a similar experience! So glad to have found these boards!

The Prilosec type drug that they prescribed for me is called omneprazole 20 mg. I am told it's like a form of Prilosec but because it's prescription I pay much less for it with my insurance. Take as needed.

Mayo posts

Reply to @ceila16:

Started off having a heavy, hard to fully open, right eye. Droopy right eyelid would actually cover part of my pupil so vision was affected. Cosmetically not desirable but, vision was my issue. Would have to physically lift my lid with my hand if I really wanted to see clearly. If I did not use all muscles in my forehead and eyes, it would completely close.

Cosmetic surgeon diagnosed Ptosis and recommended lid lifting surgery for right eye. My doctor explained that if we raise my right eye lid with surgery by shortening the tendon, my eye muscles could lift the lid better as age (66 at the time) can cause the tendon to become stretched. He mentioned the high probability that by lifting the right eyelid I could experience the “Hering effect” which could cause my left lid to droop, so he recommend I make a little adjustment to lift my left upper eye lid.

While he was looking at my eyes he became concerned with the excessive redness. So to rule out Cicatricial Pemphigoid he recommended a cornea biopsy which came back negative. So now my additional symptoms caused him to be extremely concerned with my lower lids having turned inward (Entropion). I went ahead with surgery for Ptosis on my upper right lid) surgery on upper left lid to counter the Hering response) and surgery on both lower lids to correct the Entropion.

The results were not completely successful. Only minor improvement of right upper lid. On follow up visit describing my symptoms, when first waking up or after looking downward while reading, my eye would look and feel normal. But watching it in the mirror after about one minute I could see and feel the droop return. The doctor said that is a classic symptom of OMG. So he had me tested for Myasthenia Gravis (MG) and I tested positive.
(Blood test results:
Blocking was 48, range should be 0-26
Binding was 2, should less than point .4
Modulation 41, should be greater than 45)

This blood test changed my treatment plan and involved subsequent steps with a neurologist. 1st step was CT scan of chest looking for a thymoma (negative). So now it was decided by neurologist to put the effort into drugs to see if we could counter the autoimmune response of the MG. Because it was only affecting my right eye a new diagnosis became more pinpointed to OMG (ocular myasthenia gravis). I started seeing the Neurologist to track progress to determine if the MG would move to other parts of my body. I have learned the eyes can be one of the early indicators of Generalized MG.

I first realized I had an issue in December of 2020. But in working with the Neurologist I had a very possible first symptom event in the fall of 2018 while being put under for an appendectomy. My right eye closed immediately while my good left eye stayed open until I went completely under. The neurologist said we could use that as my first possible episode on a timeline.

At first the Neurologist tried pyridostigmine only, because at the time he did not want to introduce a steroid due to a Covid infection risk. We did try prednisone later, before 2nd surgery but no help that I could determine. I have since had a second surgery only on my right upper lid in March of 2023. That surgery did add some additional lift to my right lid giving me more time the lid stays above pupil and more often, but I still struggle. Trying Upneeq on limited basis and feel it can and does add very small amount of lift for a short period of time.

Considering a third surgery attempt to keep lid above pupil. In my quest for answers and the best solutions, the Mayo Clinic keeps coming up so I started with this Mayo Connect site and learned how to get an appointment. As time goes on I continue to see a cornea specialist who has diagnosed me with Pemphigoid. A negative cornea biopsy for pemphigoid is not always a 100% surety. Currently taking 2000 mg Mycophenolate (CellCept) daily. Cornea specialist feels we have it under control for now.

I will decide on 3rd surgery attempt after being seen and treated at Mayo Clinic. Sorry if this is a long story, but that is my experience with Ocular MG.

And I was very interested to read about your experience as I haven't spoken to anybody else with ocular or any form of Myasthenia gravis. I guess I was lucky that the steroid and Mestinon did the trick and initially I was only on 2.5 mg of prednisone which didn't worry anybody but now that I've had to go up to 20 and still have some issues they're trying to find something else
Not sure why cellcept hasn't been tried. Maybe that'll be the next step. But again, after that initial low, left eyelid that helped them diagnose it I have not had any eyelid issues. It's the double vision.

I went to Mayo Clinic in Rochester Minnesota on July 29th for Ocular Myasthenia Gravis. (OMG)
I’ve been dealing with it since January of 2021. This will be a lengthy follow up to my prior posts. I wanted to explain as much as I could about the entire experience, the Doctors and the Clinic to hopefully answer questions upfront anyone on this Mayo Connect might have. But please feel free to ask about anything.

Started at 9AM with 2 eye exams (Sensory Motor Exam & general optometry eye exam) before seeing Dr Tajfirouz, Neuro Ophthalmologist. My first appointment with a Neuro Ophthalmologist ever. I was seen by her fellow Dr Punja first. She too was wonderful and thorough. I met with 6 different people before my day ended about 2pm. Amazing how well they coordinated it all. 6 different appointments from 9:00am until 2 pm. The most organized care and info sharing I’ve seen between all doctors and technicians.

The EMG test (Facial nerve conduction study & Single fiber EMG) were both uncomfortable. With the results being consistent with Myasthenia Gravis (MG), or in my case, Ocular. (OMG)

Lab test area was very crowded, but they had so many lab techs the wait was very minimal. Amazing! I was tested for about 10 different things. Ruled out some things, but confirmed MG.

Two days later I got in to see Neurologist, Dr Nicolas Madigan.
Mayo was able to move up my original appointment with Neurology that was set for 8/14 to 8/1 while I was still up there from Indiana. The person at the 8th floor East desk called around to find someone who would reschedule and got me in two weeks early.

First I met with Dr Madigan’s associate fellow Dr Ito. Wonderful and very through.

After the examination, Dr Madigan decided to put me on a regimented drug program of Pyridostigmine (generic Mestinon) and Glycopyrrolate (to help with the diarrhea side affects of Pyridostigmine). Started those meds about 30 minutes after seeing Dr Madigan because the Mayo Pharmacy was another amazing example of efficiency. The doses were a ramp up. 30mg for a week, 60mg for a week and now at 90mg every 4 hours. I am seeing positive results for the first time in 4 years. And the Glycopyrrolate really helps fight the diarrhea. It’s been about 3 weeks now since I started treatment so I don’t know what the actual end game will be. Could be on current drug program indefinitely.
I was given Pyridostigmine in 2021, but diarrhea side affects, combined with no real precise drug use regimen, & no noticeable improvement, I gave up. Could be that since then the 2nd surgery for Ptosis to shorten tendon/muscles, lifted my eye lid enough to enable the Pyridostigmine to work. I don’t know for sure, but my symptoms have improved! Thank you Mayo!

Bottom line, I am a true believer in The Mayo Clinic. Highly recommend presenting your case and records if requested and putting in the effort to get an appointment.

On a side note, and because we went up early, we spent some time getting familiar with Rochester. This town and area had beautifully manicured landscape, was a wonderful place to explore if you are able and very clean. Great restaurants and food opportunities too. A lot of different kinds of art around town as well. We walked about 3 miles around town. Awesome place. Seems like a M-F , 8 to 5 kind of place. It was fairly empty on the weekend. Walking into the lobby my first day, there was a live pianist playing music in the lobby of Mayo/Gonda building, the building where I spent all of my time with doctors and testing. Front entrance had multiple wheelchairs for those in need and tons of people to assist.
Anytime we looked a bit puzzled about which direction to go or elevator to use, someone in the background noticed, and came up to us, asking how they could help. Amazing Place!

Wow, it sounds like Mayo did a great job with you
Interesting that you are on Mestinon Without prednisone and have had success. I do 60 mg of mestinon every four hours, but also once a day 15 mg of prednisone. I assumed it was the prednisone that helped me get osteoporosis.
The droopy eyelid went away as soon as I started taking the prednisone now the issue is double vision which the mestinon helps. Thanks for all your info wishing you continued success and controlling this crazy disease.