[Junker]

Given that I just had my 2 year MG anniversary and on the vigil of my next neurologic checkup this may be an excellent occasion to reflect my different MG phases.

Unpredictability is a major MG feature that makes it difficult to identify patterns and stages. I will give it a try focusing on symptom development:

1. Disorientation – Being helpless in the face of numerous symptoms and ongoing setbacks (06/2023 – 01/2024)

MG was diagnosed about a month after it occurred. It all started with heavy ocular symptoms such as double vision (diplopia) and droopy eyes (ptosis) but it was soon accompanied by vertigo and gait disorder. The most noticeable symptoms would seem to improve when medication started with heavy doses of Prednisolon and Mestinon. Thymectomy was carried out in 09/2023 followed by a rehab hospital stay. My physical condition had been impaired by several causes: heart problems (cardiac arrhythmia), orthopedic issues and increasing overweight with clear signs of cushing syndrome driven by overdosing Prednisolon. Doctors would expect me to differentiate between symptoms and causes while I would expect THEM to specify which kind of illness caused specific symptoms. So I ended up in a situation where I felt helpless being confronted with deteriorating physical and psychological conditions.

2. Starting coordinated measures subsequent to major MG crisis (02/2024 – 08/2024)

Astonishingly things had to become worse to start to get better. Meanwhile I had collected information about MG, became member of Deutsche Myasthenie Gesellschaft (German Myasthenia Association) and succeeded in being taken care of by competent neurologists associated to a certified Myasthenia Center. So I finally had adequate contact persons when a major MG crisis hit me. Amysosthenia worsened and I was bedridden with problems to cope with daily routines and had to go hospital again. Infusions enabled me to get out of bed and to gradually mobilize. Medication has being checked regularly and the Prednisolon overdose has being reduced constantly. Another rehab clinic measure focused on my mobility, concentration, responsiveness and strengthening my muscles. Nevertheless I would not be able to walk, stand or even sit for more than a couple of minutes. A rollator became my main medical device to be able to alternate between these activities and thus increased my mobility.

3. (Hopefully) Stabilizing Symptoms (since 09/2024)

Once medication had been adjusted and started to make a significant impact I could start to set personal goals and to intensify measures to cope with MG. Notwithstanding that MG flare-ups continue to interfere with my day to day management, I could regain my job and cope with daily chores. Lack of mobility, substantial muscle and joint pain as well as sleepless nights remain to be a heavy burden, but I have the feeling that I am still making progress in regaining strength and stabilizing symptoms. For example ocular and breathing problems are meanwhile kept under control relatively well.

This text may seem like the description of a gradually improving process. That would be far from truth as way too may setbacks and moments of desperation impeded my journey. Patience is key. After 2 years of patience I feel to be in the position to reflect discreetly and categorize my MG journey. Let´s wait and see what comes next….

[Charles Karcher]

My journey with gMG began with diplopia. I was misdiagnosed by an Ophthalmologist with 4th Nerve Palsy. Approximately 2 months later Dysplasia and Dysarthria arrived at the same time. I was in an exacerbation phase. Over the next 3 months I was hospitalized 4 times each time going back into exacerbation. The first 3 times they kept using Plasmapheresis to stabilize me plus Mestinon, Cell Cept and Prednisone. That only resulted in me returning to the hospital every 2/3 weeks. The 4th time they started me on IVIG which stabilized me while inducing extreme fatigue. Ater approximately 6 weeks I was transitioned to Soliris. I was able to stop the Prednisone and my fatigue gradually lessened. After 1 year I was able to exercise again. I spent 2+ years on Soliris receiving infusions every 2 weeks. I had no side effects. The side effects I have I attribute to the Mestinon. At 2.5 year mark I transitioned to Ultomiris which acts similarly to Soloris but only requires infusion every 8 weeks. That has meant a greater freedom to live my life the way I want.

So I am approaching the 6 year anniversary of my diagnosis. I am a 73 year old male able to live a relatively normal life. I give credit to my Neurologist and Alexion for his care and their development of the infusions I take. I have not had anything even resembling an exacerbation since 12/19. I know everyone is different but I would urge all gMG patients to ask their neurologist about Ultomiris. It did not change my life but allowed me to live the life I expected at this age.

 

[Jodi]

Thank you for sharing such a thorough account of your journey. Your experience shows how complex MG can be, especially early on, with frequent hospitalizations and different therapies before stability was reached. It’s encouraging to hear that after six years you’ve regained stability and the ability to live the life you had hoped for at this stage. Your story emphasizes how individual responses vary, and how persistence can pay off. Sending good vibes your way! -Jodi, Patient Advocate

[mik]

I’m not sure what stage I’m in. My diagnosis came from having a GMG crisis in 2023 resulting in a 3 month hospital tour. At this point my Adl is 2. Nine months ago I was only using a cane but my mobility has worsened so I’m back to a walker and cane. I’m down to 5mg prednisone and 1000 cellcept. Was at 40 prednisone a year ago. Debate with my neurologist is my lack of or worsening mobility a result of prednisone taper or the 3 month hospital stay in 2023. I’m wanting to push for a different treatment plan. Any opinions?

[Jodi]

It can often be challenging to determine the cause of symptoms in MG. Tapering off prednisone can certainly reveal underlying symptoms, so both the medication adjustment and the condition may be contributing to your symptom changes. Situations like yours emphasize the importance of personalized management for MG, which often requires ongoing reassessment of treatment plans.

I encourage you to seek a second opinion and to never agree to a treatment you are not confident or comfortable with. You are not obligated to accept every suggestion from a doctor. A second opinion could provide you with valuable clarity regarding your decision. -Jodi, Patient Advocate

[Sharon Haw]

I’ve wondered if the recent talk of “generalization” or the progression from ocular to gMG is accurate. Although emergence of my ocular symptoms triggered the need for testing and diagnosis in 2019, which revealed I actually had gMG with no overt symptoms, looking back 20 years I recalled the results of a stress test that showed low exercise tolerance: my muscles tired much faster than others with my fitness level and age. I also had been tripping going up stairs for 5 years before diagnosis, and when walking for 2 years. In my case, the ocular symptoms actually came later than the generalized MG symptoms, it was simply a matter of the ocular symptoms couldn’t be ignored. It only took a month for me to see a neurologist and be diagnosed with gMG.

As to gMG’s progression, I was relatively symptom free on mestinon and steroids in the first 6 months, then a low kidney function test and a mestinon side effect of twitching lower eyelids had me switched to cellcept in late 2019. I led a relatively normal life for five years except for infections due to taking immune suppressant medication. Then I caught a respiratory virus which my doctor said was likely RSV or Covid even though I didn’t test positive for either. It lasted 6 months, I cracked a rib coughing, and I got an MG flare that knocked my energy out.

It’s been a long road back and I had another flare this February when I went to Disneyland on an unseasonably hot day with my family. Despite preparing by building stamina ahead of time, and using a scooter on site and not overdoing it, I had zero energy for weeks afterwards and could only walk a few feet before getting out of breath. My neurologist had prescribed Mestinon as a top-up for when I noticed symptoms, so that helped me get through it but heat intolerance is still an issue at any temp above 75F/24C and I’m only up to walking for 35 minutes at a slower pace. My neurologist is slowly reducing my dose of Cellcept by 125 mg daily every 2 months to find a dose that controls my MG without causing constant infections.

I still haven’t reached the energy level I had in my first 5 years after diagnosis but focusing on building strength and stamina, eating healthy and getting good sleep is getting me closer all the time. I regularly see a dietician and personal trainer, and I start seeing an occupational therapist next week who is going to help me get started in Tai Chi. I find the support in private sessions very valuable in building foundational skills and coordinating activities so I don’t get overwhelmed.

[Jodi]

Hey Sharon, you’ve highlighted something important. Many people, like yourself, recognize generalized signs years earlier. However, often, the visibility of ocular issues that leads to diagnosis. MG is highly individual. Your story of medical treatment and supportive therapies is a relatable reflection of that complexity. Sending good thoughts your way -Jodi, Patient Advocate

[Rocky]

I am an 82 year old male who first noticed MG symptoms with double vision in late May 2024. In early June, my ophthalmologist thought it was most likely ocular MG as I also had a droopy eyelid. I had suspected this would be the diagnosis as, unlikely as it might seem, my wife was diagnosed with ocular MG eight years ago. Blood tests confirmed the MG diagnosis on July 3, 2024.

One of the most difficult things was getting an appointment with the neurologists as they are booked months out. The medical organization my wife had used is outstanding and I was fortunate to find an opening with an ocular neurologist on 7/18. He prescribed Mestinon at 60mg four times a day. The ocular symptoms began to disappear over the next several weeks.

The great thing about the medical organization I used is that once you are a patient it becomes somewhat easier to be referred to other specialists. So on 7/24 I had my first appointment with the muscular neurologist. He started me on Cellcept at 1000mg in the morning and 500mg in the evening. However during August, the general MG symptoms worsened significantly. It became difficult to walk even short distances, it was hard to lay flat on a bed, shortness of breath, significant pain in the spinal column and neck area, Dropped Head Syndrome started, and impossible to drive a car. In mid August I had a five day infusion of IVIg which continued monthly through January 2025. I also started Prednisone at 20mg daily on 9/3 and began deep tissue physical therapy on the back and neck areas.

The combination of the above drugs and therapy reduced my MG symptoms dramatically very quickly. In fact I was able to begin playing golf in early October. Currently, my only MG symptom is a slightly droopy eyelid and eyelid twitching most likely due to the Mestinon. I am continuing all the above medications with the Prednisone at 2.5mg daily. I can do all activities, am playing golf several times a week, and try to continue an active exercise program.

Over the past year+ I have been reading the posts on this and other websites. I am not sure why my symptoms have lessened so much given how many people suffer greatly from this terrible condition. Also, I am not sure how long my good fortune will last. Being able to work with extremely competent neurologists with the early diagnosis has been key.

[Cindi]

Hi Rocky, I hope you are still doing well. I’m 75, and your post prompted me to write. I believe my MG started at age 16 when I started having restless legs. I didn’t know what it was at the time. Through the years, I had a lot of different symptoms, but nothing major. Then, 2 years ago, I got double vision and have prisms in my glasses. Then, in early 2025, my head started dropping. After many doctors, I was finally diagnosed with MG LPR4 antibody. I still cannot hold my head up when standing or walking. I just started on Mestinon and have been on Celcept. The other symptoms I believe I can deal with, but the dropped head is my main obstacle to life right now.

[Woofy]

My symptoms started 1.5 years ago with double vision then advancing to not steady on feet to muscle weakness and a burning pain that feels like your leg muscles that just climbed 10 flights of stairs. Not sure if my symptoms are getting worse and efforts to help are just not enough. IVIG infusions help some and less now so added Mestinon and again helps some but now this muscle pain is moving up my body to arms, shoulders, neck, back and the previous areas have less pain. Trying this for another month if stable but if not better will try another med but don’t want to due to side effects. Stage? Maybe continuing to get worse?

[David S]

Diagnosed in 2019.

I would consider my current condition as Stable/ Mostly Manageable.

I still have double vision, muscle weakness/fatigue, tremors and speech issues and other gMG associated symptoms. These get worse when under stress.

Still taking mestinon, imuran, prednisdone and IVIGs.

What I have done that allows me to have a “good” life is to control my environment as best I can. Nutritious meals – for the most part – rest when required, daily exercise and a couple of hobbies that require me to think, and a safe place to spend my time, not to mention trying to control stress.

For me, if I’m around groups of people and am having interactions with them and the surroundings, I will soon not be able to speak, get tremors and must leave because my symptoms increase – and that is not good.

I can’t play cards, dominoes or other board games as I can not focus on the pieces and get disoriented, then the stuttering and tremors begin.

Life is not what it once was but it is a good life within my limitations.

The hobbies that keep my mind working are Simulated Golf and a Flight Simulator that I use in VR Mode. I do most of the lawn work around our small yard and try to walk 3 miles avery morning. Limit my calories to no more than 1800 per day and drink lots and lots of water.

We do limited travel – October 1st we are flying to Paris for 5 nights then London for 4 nights and then a 14 day Trans Atlantic cruise to Ft. Lauderdale. This is certainly the biggest most complicated trtip we have taken but are going to give it a go. Plan to sleep on the overnight flight to Paris and have 4 leasurely days planned there and in London. Lots of bathrooms and places to sit is what I look for during planning trips and of course plenty of Rest Times. WE are not wealthy but have been able to manage our expenditures to live modestly. My DW works very hard and she pays for our trips. I hope with the VA Granting me Service Connection for gMG that this will provide us with a few more dollars to travel a bit more.

We have been moving toward this trip since 2022 when I realized that at 281lbs, I really had to do something to see if I could make things better. My weight today is 210#. Do I feel better, but the most important thing is that I am no longer carrying around those extra 70 pounds.

My Neuro used the R word during my last session with him, but I reminded him that many times I appear to have nothing wrong with me, but given time and environment, it can change rapidly and my symptoms raise their ugly heads again.

“Eat well, control stress and walk 3 miles a day” – that’s what Andre from another MG websit said to me back in 2019. Back then I could not comprehend what he meant, but felt that they were good goals to try to achieve. Over the years we have worked on each of those things and things are good – not what they were but good.

Sorry to be long winded – – –

S

[W Courtland Robinson]

Current stage: Stable/Long-term Management

I got my diagnosis in 2014 (general MG) followed by a thymectomy (successful). I scaled back on work and international travel (I work on humanitarian health research so some of the environments are quite austere and higher-risk with conflict and insecurity) but I have not retired yet (now 70!) as I love my work. I had a few years of very mild symptoms with minimal treatment (pyridostigmine, only one or two pills a day). In the last few months with a very hot and humid summer, my symptoms have increased (dysphonia, trouble chewing and swallowing food, fatigue) and I am back up to about 6 pills a day. But overall, more than 10 years into this, I feel pretty good though I am scaling back to part-time work this year and will retire fully in two more years.

[bmg]

I have told my journey with Myasthenia Gravis, several times in other threads. But, I understand the importance of being thorough in responding to inquiries.

We returned home from Hawaii in 2012 and within a couple of months my symptoms started as a tsunami wave. I never had trouble speaking, swallowing or upper body strength. At 57 years of age and 30 years delivering the US Mail my legs were not as strong as they used to be, especially if I sat down in lower seats. It was difficult to get standing. By the time the first wave hit. My family thought that I was having a stroke. So, a trip to the ER and found out I was not having a stroke or any other cardiovascular issue. But they had no clue. Neither did my PCP. He thought I was his test subject. He prescribed tests and medications for all sorts of diseases and conditions. Nothing helped and I was loosing weight, a lot of weight, very quickly, too quickly, because I couldn’t swallow anything but broth. I became very weak. It took almost six months for my wife to suggest that I should see a Neurologist. My first appointment, upon hearing my symptoms, reading my medical records, he immediately diagnosed Myasthenia Gravis. He set up an EMG and Nerve Conduction. Meanwhile, he prescribed AzaThioprine and Mestinon. My symptoms started to go away almost as quickly as they came. My speech was first to return and slowly my swallowing became easier. The meds helped for years and my Neurologist was very happy with my being in remission. After about six years, I was taken off the AzaThioprine. After another few years, the Mestinon became less effective so my dosage was increased from 3-60mg tablets per day to 4-60mg tablets per day. By 2024 my swallowing and speech were becoming more difficult and I started getting double vision when I became more fatigued. Then in October 2024, I tripped backwards over tree stump and broke my neck. I needed surgery to reinforce the cervical Vertibre with titanium rods. While in intensive care awaiting surgery, I couldn’t swallow anything and I wasn’t getting my meds especially the Mestinon. My MG was getting worse and it was becoming almost impossible for me to verbally communicate with anyone but one of my daughters. The hospital was having difficulty getting all the meds in IV form, so I was missing my regular routine. We finally convinced the medical team to fit me with a PEG Feeding Tube. Which was through the abdomen. It was almost miraculous and surprised the medical team how quickly my voice cleared up enough to be understood, but it still wasn’t normal. Moving forward a few months after my surgery, intensive care and all the Physical Therapy sessions helped me to become more mobile and physically independent but, my swallowing and speech therapy hit a wall and wouldn’t return to my prior injury status. Even with increasing the Mestinon to 5-60mg tablets per day, I remained with difficulty swallowing and speaking. In July I started infusions of Vyvgart. After the first of four infusion sessions, my family was amazed at how clear my speech became and by the fourth session, the swallowing was a little improved. The last four weeks I have been on the hiatus time period and by week three my symptoms started returning. I just had the evaluation appointment with my Neurologist and he reordered my infusion therapy.

That’s where I stand this week of September 12, 2025.

I just turned 70 years old a few days ago. I enjoyed the weekend with my wife, five daughters and eleven grandchildren. My eldest granddaughter, who just stared college, came and sat with me on our back porch just talking about her new college experience. I was so excited blessed and proud to be able to communicate clearly with her.

Thanks for listening to my story.