My MG Story
By Richard Schmittdiel
My MG story starts in late July 2016 when I first experienced double vision. At first I could sort of blink and squint it away. But one day it became difficult and uncomfortable to drive, so I pulled over and asked my wife to drive. I made an appointment with my regular optometrist. He told me to manage the double vision by wearing an eye patch and to seek a diagnosis from an ophthalmologist. By the time I got that ophthalmology appointment in August, my right eyelid had started to droop noticeably. The doctor confidently said that I had palsy of the 4th cranial nerve and it should clear up on its own without intervention. We had already planned and paid for an August trip to Ireland with friends, so I packed my eye patch and off we went. The trip was great fun, but I was starting to have trouble with my gait. My right foot felt kind of “floppy”. It felt like trying to walk while wearing swim fins.
As we approached the end of our two week Ireland trip, it became harder to breathe. One evening after dinner, when we had to walk uphill a couple blocks to reach our hotel, I couldn’t make the walk without stopping to rest and required assistance from my wife and friends pushing and pulling me along as I huffed and puffed. I knew something was seriously wrong, but I was determined to finish the trip and return home because I didn’t want the trip extended by being hospitalized in Dublin. In hindsight, this was evidence that I was having an MG crisis, but at the time I didn’t know anything about MG. I wanted an appointment with my regular Kaiser doctor as soon as I got home from Ireland, but was frustrated trying to make an appointment on short notice, until I said the magic words on the phone to the Kaiser appointment desk, “I’m having trouble breathing.” I was strongly urged to seek emergency medical attention in Dublin, but I insisted I was getting onto the plane for home the next day. Magically, an appointment with my Kaiser PCP opened up for the day after our return home!
When I saw my Kaiser PCP in early September 2016, I was in pretty sad shape. He examined me, and then excused himself from the room to make a phone call. He came back into the room and said they thought I might have myasthenia gravis and that I should proceed immediately to Emergency at the main Los Angeles Kaiser hospital on Sunset and that they were expecting me!
In the ER I was hooked up to intravenous plumbing and a monitor, blood was drawn and I was given the Tensilon test, a diagnostic tool to confirm MG. I still had the droopy eyelid, but when they injected me with Tensilon, my eyelid immediately popped open to normal! The resident neurologist attending me in ER said this was pretty positive confirmation of an MG diagnosis. Alas, the effect of Tensilon wears off in a few minutes. I was admitted to the hospital and stayed there for five days, while my wife Marlen stayed with me constantly, sleeping on a tiny couch in the room. During my stay I was given multiple IVIG infusions, started on prednisone and Mestinon and given respiratory therapy to try to stabilize me. I had a CT scan to confirm that I didn’t have a tumor on my thymus.
Fast forward to early 2018 and I’ve now been on prednisone, Mestinon, Cellcept and Imuran, as well as regular IVIG infusions. My strength and breathing improved somewhat but I still had double vision. Prednisone controls MG symptoms but at a steep price in terms of side effects. Dr. Nazanin Matloubi, my Kaiser neurologist, suggested we try an infusion of Rituxan. My first Rituxan infusion was in March 2018. I began to improve noticeably and the double vision slowly cleared up. At first I was getting Rituxan every three months while I tapered off prednisone. Now I get a Rituxan infusion once every 12 months and take no other medicine for MG. I’m pretty much asymptomatic now and feel fortunate that my symptoms are effectively managed.
”MG Doesn’t Have Me”
by Majelane Bautista-Dinh
It was January of 2011, I had just finished the first semester of my master's program and decided to celebrate with a weekend of snowboarding in Mammoth, CA. Little did I know that my carefree life would take an unexpected turn when the next weekend I wasn’t able to carry a load of laundry up the stairs without falling to my knees. I panicked and wondered what had happened to cause this sudden weakness in my body. Was it some weird reaction to the altitude change? Did I not sleep enough? Did I unknowingly hit my head on the slopes causing some kind of concussion?
Originally, the Physician’s Assistant thought that I had rheumatoid arthritis or lupus and referred me to a specialist. Luckily, that specialist was familiar enough with Myasthenia Gravis to run the appropriate blood tests to confirm it. MG didn't care that I was in my 20s, adventurous, and had a bright future ahead of me. It attacked my body just the same as it has to so many others. I find myself fortunate that I was diagnosed with MG rather quickly and I didn't experience the torture of the unknown.
Since being diagnosed, I've tried various doses of Mestinon, along with Cellcept, Prednisone, IVIG, plasmapheresis, and even had a laparoscopic thymectomy in June of 2016. I experienced an MG crisis in 2022 after pregnancy and the stress of having a son born with transient neonatal MG. Since then my condition has been manageable with the cocktail of medications that my doctors have spent the past decade trying to perfect. While I'm feeling better and able to carry out a pretty normal life with a toddler and full-time job, I know that these medicines are just band-aids and more research needs to be done so we can find a cure.
I have an amazing support system and I wouldn't be able to do it without them. As determined as I am, I'd be lying if I said that I never stressed out or worried about my condition. In those times of confusion, my support system is there to pick me up (sometimes literally) and remind me that everything is going to be OK. While I may have MG, MG doesn’t have me.
My MG Story
by Paul Driskell
On Father’s Day 2011, my daughter noticed that my left eye was drooping and she was afraid I was having a stroke. We went to Hoag Hospital Emergency where after a thorough physical it was determined that I had not had a stroke but should see a neurologist which I did the following week. I was diagnosed with Ocular MG.
The doctor that I had been referred to said he was leaving his practice and I should seek care at UCI ALS Facility in Orange Calif. I have been treated there since. I was told at the time that if my symptoms did not progress to generalized MG within 2 years, it probably would never advance.
In 2014, I was diagnosed with pneumonia and spent five days in the intensive care unit at Memorial Hospital. The doctors could not find the proper remedy. In retrospect, I now believe that was my first Generalized MG Crisis.
In 2017, I was in Cancun, Mexico and diagnosed with asthmatic bronchitis. Again the normal drugs did nothing. Probably my second crisis.
Then in 2018, I was admitted to UCI MEDICAL CENTER with a diagnosed MG Crisis. There I spent several days in the hospital only to go home and have a relapse. Then several days at St. Mary’s Hospital in Long Beach with an adverse reaction to the prescribed drugs.
Since that time, I have stabilized using IVIG and Prednisone with the normal symptoms of abnormal tiredness and extreme muscle weakness.
I describe it as … I have plenty of energy but no stamina.
I feel sorry for myself until I see how much more others are affected then I feel very fortunate.
I am also fortunate to have the very best personal caretaker in Connie DiPasqua. Thank you Connie.
Paul Driskell
Learning Everything I Can About Myasthenia Gravis
by Mike Stabile
My MG diagnosis
When the pandemic began in early 2020, I woke up one morning with diplopia (double vision). Fearing a stroke, I raced to the emergency room (ER). Unable to confirm anything, the ER doctors referred me to a neurologist who, 2 months later, verified my late-onset ocular myasthenia gravis (MG).
Since 2021, my MG has evolved to a form informally termed "bulbar MG," where my symptoms during flare-ups are ptosis (eyelid drooping), dysarthria (difficulty speaking), dysphagia (difficulty swallowing), and weak facial muscles. I tend to cycle through flare-ups and remissions about 2 to 3 times a year now.
I learned everything I could about MG
In July 2022, I was hospitalized for 5 days for failure to thrive because I couldn't swallow food or my MG medicines (Mestinon® and prednisone) during a flare-up. Upon release, I vowed to myself to learn everything I could about this disease and the resources available on the internet using my background in physiology and technical work in hospital medicine.
I discovered numerous organizations such as the Myasthenia Gravis Foundation of America, Myasthenia Gravis Association, Conquer MG, Myasthenia-Gavis.com, and many others, along with support groups across the nation whose virtual meetings I began attending. I joined the Southern California MG Support Group in early 2023 and subsequently offered to set up a website for the support group this past summer.
Setting up an informational website for our support group
Since I had acquired a wealth of information about MG during the previous year, I had plenty of content available to create a useful website for our group members. One of the driving forces of my personality is helping others by using resources, knowledge, and skills I've obtained throughout my life. Creating this website, MGSoCalGroup.com, was the perfect vehicle for doing this. I now constantly update and add content that I think other members might find useful.
Becoming my own advocate
By far the most important thing I've learned is to become my own advocate and learn as much as possible about every aspect of this disease, even down to the biochemical level.
My neurologist does not specialize in MG but does have some experience treating a few MG patients. However, when I combine my experience and knowledge gained after 4 years of MG along with the doctor's willingness (after gaining trust in me) to let me advocate for myself, I feel satisfied with my care so far.
In fact, over the past year, my flare-ups have gradually gotten milder. I also attribute this to:
Learning to recognize the start of a flare-up
How to best use and wean up/down on prednisone and Mestinon
Recognizing and avoiding triggers
Respecting the state of being immunocompromised
Learning the best nutrition habits
Being as positive as possible about life
By the way, it turns out that proper nutrition is much more important than I first realized.
Misconceptions about the condition
From all I've seen and heard from others, people will tend to think MGers are just lazy. They don't understand that resting one's muscles can actually be a form of therapy and may improve symptoms. I have noticed that even doctors and physical therapists, for example, will push MGers to work harder at building up muscle strength, not bothering to learn that such efforts can often exacerbate the symptoms.
I feel very fortunate to have only the bulbar symptoms of MG, so I can lightly to moderately exercise my body from the neck down without ever developing widespread limb fatigue. I do have to be careful not to over-exert myself (such as doing "cardio" exercise) or I'll trigger a flare-up – a lesson I learned the hard way.
Hopeful for a cure
Advances in MG research are rapidly accelerating, and I'm hopeful we might have a cure discovered during our lifetime. Also, despite all the new drug therapies available, health insurers can be the biggest roadblock to obtaining the best available care.
My advice for those diagnosed with MG
My advice for those with MG is to learn as much as you possibly can about your disease and try to stay up-to-date with all the advances in treatments and medications currently available or "in the pipeline."
Always strive for the best care you can get, and don't let incompetent doctors and ill-advised friends and family dictate your decisions and mental well-being. Always be your own advocate, or else find a trustworthy and compassionate one (and treat them with great respect).
(This article first appeared in Myasthenia-Gravis.com.)