Tagged: disease progression, generalized, phases, progress, progression, stages, symptom progression
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Myasthenia gravis stages: what phase are you in?
Posted by Jodi on August 11, 2025 at 9:40 amHow does myasthenia gravis progress? While there are no official myasthenia gravis stages. Many individuals experience different phases, including symptom onset, generalization, crisis, and long-term management (https://myastheniagravisnews.com/types/).
The progression of MG varies from person to person. Some individuals may only experience ocular symptoms, while others may start with ocular symptoms that later generalize to affect the entire body or lead to a crisis. Additionally, some individuals begin with generalized MG and may find that their symptoms stabilize over time.
What has your progression or stages with MG looked like? Have you noticed any changes or patterns over time?
Sharon Haw replied 2 hours, 42 minutes ago 5 Members · 4 Replies -
4 Replies
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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….
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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.
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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?
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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.
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