[Patrick_B]

My Myasthenia Gravis Journey – A Story for Insight and Support

In June 2022, my journey with Myasthenia Gravis began subtly—just some double vision and a drooping eyelid. By April 2023, the diagnosis was confirmed: AChR antibodies positive. I started on Mestinon and a few months later added Imuran, without corticosteroids. In September 2023, I underwent a thymectomy.

2024 brought relief. By October, I had been symptom-free for months and reduced my Mestinon to just one dose a day. My MGFA class was I, MG-ADL score only 2. Life felt stable.

But then came a turning point.

In late December 2024, the double vision returned. I restarted Mestinon, but it didn’t seem to help. On January 9th, 2025, I received an epidural infiltration (L4-L5) with 80 mg Depo-Medrol and lidocaine. It’s a long-acting corticosteroid—possibly the trigger for what followed.

Over the next few months, my symptoms worsened—more ptosis, more diplopia, especially with fatigue. Even five doses of Mestinon per day didn’t provide relief. Physical exertion (like a ski trip) made things worse. By March 19th, I reached out to my neurologist.

In April, new symptoms emerged. Swallowing became difficult, my speech slurred, and my right eyelid would droop completely when I was tired. A severe cold hit hard—I struggled to clear mucus, a complication of MG. I contacted my GP for medication to help, and requested time off work.

Looking back, this seems to be a delayed exacerbation triggered by the corticosteroid infiltration. Ocular symptoms started in December, bulbar symptoms didn’t appear until April. Mestinon alone isn’t enough anymore.

It’s time to rethink treatment. Corticosteroids or IVIG may now be necessary.

Sharing this in hopes it helps others recognize patterns, prepare for appointments, or just feel less alone in their MG journey.

[Ari Maayan]

My first symptom of MG was both puzzling and amusing. At the time I didn’t realize that I was experiencing a symptom of MG. I was standing at a covered bus stop in Las Vegas, Nevada, waiting for a bus. I stuck my head out from under the cover of the bus stop and looked up the street to see if my bus was coming. It was a 6 lane blvd and what I saw was two buses in the three lanes pointed in my direction. They were clear and distinct, and there was no blurring or fuzziness or anything to suggest that I was not looking at two real buses. When my bus pulled up in front of the bus shelter, there was only one bus. That left me, scratching my head And wondering what had happened. I couldn’t figure out how such a thing could happen and what the meaning of it could be. Within 48 hours, I got the answer. I had my very first full blown, serious, life-threatening myasthenic crisis that put me in the emergency room and then into ICU.

[Rocky]

I am an 81 year old male and first noticed double vision in late May 2024 while playing golf. I made an appointment with my regular ophthalmologist who also noted some droopy eyelid issues. I had a brain MRI as had a fall a short time ago which did not indicate a problem. We discussed Myasthenia Gravis which I was familiar with as my wife was diagnosed with ocular MG seven years ago. In mid June I had the blood test for MG which came back positive on July 3, 2024

I was fortunate in being able to find an ocular neurologist who I met with on July 18, 2024. At this time there were no other noticeable symptoms. Mestinon was prescribed at four 60mg per day. This significantly cleared up the double vision within a few weeks.

On July 24, 2024 I met with a Neuromuscular specialist. At this time I still had only the ocular issues. The doctor started me on Cellcept, 1000mg in morning and 500mg at night. I also had a CT scan of the thymus which came back with no issues. Starting in mid August several other MG symptoms became very noticeable and concerning. These included difficulty with walking and balance, Dropped Head Syndrome where chin lowers to chest while walking, significant pain along the entire spinal column up into the neck, breathing issues when lying down, and general low energy. These symptoms were really debilitating and I could barely walk 100 feet.

The neuro doctor started me on Prednisone 20mg daily, a week of IVIg infusions followed by monthly infusions through January 2025, and authorized physical therapy on the back and neck. The combination of the above resulted in rapid improvement such that in October 2024 I was able to play golf for the first time in over three months. Over the past several months I have reduced the Prednisone to 2.5mg per day and continued with the Mestinon and Cellcept dosages. In my opinion, one of the major factors in where I am today is back in July I was able to recognize the problem was MG and was able to receive excellent health care from both ocular and muscolar neuologists.

Right now I feel unbelievably fortunate that most of my symptoms are fairly mild particularly after reading many of the heartbreaking stories of others with MG. As with any major disease, you are never really sure if or when the symptoms will recur. (I know this well as my wife is suffering with breast cancer now after having won the battle 22 years ago.) So we keep our faith in God and try to make the best of every day we have together and give support to others.

[russ]

It was 10 am on a nice morning in May, and I was mowing the lawn with a riding mower and I started having double vision. It was bad enough I had to shut one eye to continue mowing as the double vision was confusing. It persisted the rest of the day, but the next morning was OK until about 10 am. And then every morning was the same with one of my eyelids drooping a lot.

I went to the eye specialist at Mayo Clinic in Rochester about 3 days after it started He was quite interested in my symptoms, and talked to a colleague. Then he applied ice packs to my eyes for maybe 2 minutes with the drooping lid going away.

“80% chance you have myasthenia gravis,” he said, “I am sending you for a blood test next.” And two days later the test showed ACHR + MG diagnosis. Although that was the first symptom that actually led to a diagnosis, I had been complaining of tiring quickly and getting out of breath for at least a year before. So that may have been some early signs. From the eyes, within 2 months my MG included my head and the rest of my body and breathing and I was in the hospital with breathing issues.

I spent quite a bit of time googling MG trying to figure out what I had as between my eye visit and the neuro visit was several weeks where I was pretty scared and wondered if I was going to die.

[funjohnny]

I was eating dinner at my sister in law’s house September 2013, all of a sudden I started to slur my words. I couldn’t pronounce the “th” sound. It was weird. Started to have a swallowing issue also. We were visiting family in NY at the time. Came back home to Austin, and still was having these issues. Went to ER, they took tests and the ER doctor said, “it isn’t ALS” which I guess was to make me feel better. I was getting nervous about what was going on. I was an avid cyclist at the time and one of my riding buddies was an ER Doctor who lived near me. I told him what was going on, he had me come to his house and sat down with me, asked questions, did an examination and within an hour said to me, “ I am sure you have MG”. Never heard of it before. But with his diagnosis I felt better, made an appointment with a Neurologist and was put on Prednisone. Found another Neurologist who agreed with me to not stay on prednisone and switched to Cellcept and Mestinon. Since I was able to continue to do everything I was already doing, except slurring my words and difficulty in swallowing. She also encouraged me to have a Thymectomy, even though most doctors at the time were not keen on surgery for a patient over 65. I was 66.

I am now 77 and thankfully still able to do everything I was able to do before MG. Sometimes in the hot Texas summer I slow down a little faster than others who do not have MG. I am now an avid Pickleball player competing with people many years younger than I.

[S. R. Prasil]

Not sure what first symptoms were, as so many things can be tied to MG. One weird thing I remember happening often, at random times, and with no apparent reason, was the floor trying to trip me! Usually on my left foot, which I now recognize as foot drop. But the thing that first got me going to the doctor was that I was no longer set on ‘go’ all the time. In fact, I was finding it difficult to find energy-physical and mental- to continue working a full time job and 6 part time jobs along with social obligations and volunteer work. The doctors all suggested that it was due to ‘old age’ (at 50! SMH) and said to slow down. Gradually, I dropped part-time jobs til I was left with only 1 in addition to my full-time high stress hospital job. I had been having my left eye close randomly, but chalked it up to allergies, and since it never really affected anything other than appearance, I always ignored it. After some years of having this happen, my eyes started feeling very tired, along with the drooping. I had mentioned this to my most recent at the time doctor who initially attributed it to eye strain. As most of my work revolved around computers, it seemed reasonable. Then one day at work, I was powering through, typing on my keyboard,and my boss stopped at my office and asked if I was awake. What a silly question, I thought, and asked her just how I could type while asleep. She said my eyes looked shut. I called my doctor and asked if he wanted me to send a photo of what it looked like when my eyes ‘got tired’. He told me to come in immediately. He was the first person to suggest MG. BTW, during the last three or four of these seven years when I was trying to find out what was happening, I would also have random heaviness in my limbs. I described it like how you feel after working out to exhaustion, heavy and burning ache. Around the time a doctor first suggested MG, I also started having eye twitching, that graduated to random facial muscles twitching. The tongue fibers jumping was wild! Quickly following, was slurred speech and desperately needing a nap by 1pm. Then, head tilt, difficulty swallowing, and a period of mostly being confined to bed because I couldn’t even turn over without help. From diagnosis 2017 to 2021, things went downhill. But things have improved (another story), and while I am slow and take lots of rest breaks along with long naps-I can do most of the things I need to and may things I want to. I live alone again and do my own errands and yardwork, including moving rocks in Alabama summer heat. Off all MG meds since 2/2021. Hope I continue to improve and hope this brings some hope to those who have been newly diagnosed