What Year Were You Diagnosed With Myasthenia Gravis?

Iam a 56 yold mor. obese male, got diagnosed in 2017, after experiencing slurred speech. I thought I was about to get a stroke. I rushed to the local nurse who straight away diagnosed me with MG, she directed me to the local hospital, who finally got me an appointment with a neurologist in the major city. Where the diagnosis was confirmed. During the next 4 years, all I experienced was slurred speech, rare innability to swallow or drink ( also under extreme loads, walking more than 6km or going up 8 flights of stairs my legs would paralyze, but after a short break would be fine, I didn't think this was part of MG). Didn't think much of it visited my neurologist yearly, stopped taking Mestinon. In 2021 one day suddenly my legs and arms became very weak and my damaged left knee suddenly got swollen after 20 years. I thought I had arthritis or something similar, started seeing a doctor about that. after 6 weeks got a cortesoid injection in the knee. 2 days later due to bleeding in the stomach ( first time) had an endoscopy (doctors knew I had MG) had respiratory distress while coming out and 6 days in ICU (wrongly diagnosed as MG crisis). Was put on monthly IVIG infusions, Mestinon 360mg p/d and the pack to stop the stomach bleeding. 6 months later 4 days before getting an IVIG, fell very short of breath ( as in max 10 m walking). On the day of IVIG stopped 50 m outside hospital and got nurse to wheel me in. Went into respiratory failure 12 days ICU + 9 days observation ( 30/280 pounds lighter). Diagnosed as MG crisis. During stay in hospital got talked in to a colonoscopy, when I get stong enough. Got put on steroids 4mg p/d. 6 month later had colonoscopy, again respiratory distress, ( my own fault, didn't have the strength to blow hard enough untubulation) 5 days ICU + 3 observation. 2 days later after disscharge legs almost completely useless, appeared to be small infection. Fastracked to Chemo light (Cyclophate) and weaning of steroids. 6 months later (2 weeks ago) almost complete remission, except legs, in particular both knees. Neurologist says maybe not MG, they will now check for rheumatoid arthritis as steroids blocked blood tests previously.

I am a active 81-year-old man who woke up the Tuesday before Christmas and my left eye was closed and unable to open and the right eye was about half open. My primary care office said go to an ER now. They were concerned with a stroke. After 5 days in the hospital and numerous CT scans and a couple MRI,s I was tenably diagnosed with Myasthenia Gravis. The diagnosis is complicated because I have been receiving Immune therapy for Melanoma. There is some question if the therapy could be related to or separate from the diagnoses My Cancer Doctor stopped the immune therapy.. I am referred to a Neuro-opto Dr. The wait time for appointment has been 5 weeks. Not knowing what to expect is the very worst part. The internet seems to contain contradictory information.

This has been a long journey for me to be diagnosed. The end of June 2023, I started feeling really bad. I am 75 but a very active woman. Always helping and doing. I was under a lot of stress in building a new house and selling and moving from my present home. Fortunately, my daughter and I share this home. But I was doing all the packing at the time and thought the tiredness I felt was age related. Then I developed headaches, double vision, some numbness on my left side of face, left eye somewhat droopy. Then, one day I could not chew or swallow. Went to the hospital and worked up for a stroke (I am a retired RN). All testing came back normal.

Then in October I was with my daughter who lives in Washington, DC and became short of breath and choking sensation in the middle of the night. Went to the hospital where a neurologist was in the ER and diagnosed me immediately with MG. Admitted straight away and started on IVIG. Was in the hospital for a week. My antigen level came back at 21! Now on Pyrodostigmine 120mg total a day and Predisone 40mg daily until Feb. Doing much better now but still weak.
So, being a active person as I was, this is very hard to take. Now taking one day at a time and hoping for the best.

I was very active in 2013 (age 47) when I suddenly hit a downward spiral that caused me to lose almost 30-lbs within a month and become almost bedridden. It would take another five years, half a dozen hospitals (including three of the top neuro facilities in Chicago and MN), and more doctors and tests than I can remember before I was hospitalized due to shortness of breath in December of 2018. The pulmonologist quickly realized it wasn't my lungs but my diaphragm that could not move air effectively and a neurologist on staff suggested a Mestinon trial and within a week I showed substantial improvement, confirming their suspicion of Seronegative MG. I improved significantly within a short period of time and although I felt better, I wanted to actually feel good again and began IVIG in March of 2019 in the hope of resuming my previous physical activity. While the initial response to the combination of Mestinon and IVIG was very encouraging, the illness has progressed much faster than I ever anticipated and the meds are no longer as effective as they were initially.
At 57, I'm at the maximum dosage and frequency of both and my functionality is marginal even on a good day, which aren't as frequent as I'd hoped. I was also briefly on Cellcept as well but suffered adverse reactions and had to stop.