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I just want to input how mine went. I became symptomatic in 2013. In 2024 I had a 4 foot resection of small intestine due to another rare cancer. Carcinoid, aka Neuroendocrine cancer.
When I healed from the surgery 4-6 weeks later MG became my new friend. Hit me like a ton of bricks. Up at 8, take shower, back in bed by 11. Absolutely no strength. No appetite, and like you describe, could not swallow and eat. I lived on baked potato, soup, ice cream, protein drinks, steamed carrots.
Of course I and all the doctors in So. Ca. Thought it was due to recurrence of cancer. I literally ran from one doctor to anther at all major medical centers. Multiple cardiologists, pulmonologists, endocrinologist, rheumatologists, neurologist, gastroenterologists, neuro opthamologist, even had one cardio put me into rehab due to the shortness of breath. OMG. I finally ended up at UCLA where a doctor that treated me for my cancer follow up scans sent me to their rheumatologist. By 2017 I was ready to try anything. I had to retire from my own business, so was pretty upset. Anyway, after a bout with my back took a prednisone pack. OMG, I could walk, talk and function, some. The rheumatologist upon my pleading put me on 5 mg prednisone. Told him I’ll tak a little life than in bed forever. Fast forward to 2020. I saw a neuro who did the SFEMG, put me on 20 mg prednisone and mestinon, to which I responded well. I then moved to Arizona and saw a Dr. Muley. We did IVIG first and now have been on vyvgart for 2.5 years. Moral of the story is when the disease is managed well, things like gastroparesis and SIBO, which i was dx’d for both in my search, will dissipate. I lost 35 pounds early on. I was actually anemic, BMI 19.5. Today thanks to prednisone I have a BMI of 25.5.
Find a good doctor who will get you the needed treatment and life can be better. Not perfect, and I have bad days, but I feel good 70-80% of the time.
Sorry for the rabbit hole. Hope it helps someone.