Do you have problems swallowing?
Myasthenia gravis causes weakness of the swallowing muscles of many individuals, leading to problems involving choking, a terrifying experience, https://myasthenia-gravis.com/living/swallowing-speaking-symptoms, https://myasthenia-gravis.com/diet, and https://myasthenia-gravis.com/living/barium-swallow-experience.
Have you had problems swallowing before? What foods are tolerable? How do you manage to take any prescription pills?
No
Hi, new to the forum but not new to MG. Diagnosed in 2018 because of double vision and drooping left lid. I had a thymectomy and things seem to clear up. I was told two years ago that my MG was likely just occular and that when you are diagnosed if symptoms don't evolve into generalized MG within three years, it probably won't. Fast forward and last fall (2024) i had my lower right lobe of lung removed (cancer) (i haven't smoked in 30 years). I thought i was recovering just fine until Jan (2025) and now suddenly i'm having trouble chewing, swallowing and my voice get nasally off and on. Does anyone think the stress and worry of the operation triggered this?
Hi all
I was diagnosed 24 years ago. The first diagnosis was wrong, A mini stroke, then that Dr. went on vacation and was sent home from the hospital with a blood thinner prescription. My number 1 symptom was slurring of speech, chewing and swallowing. A month later after going thru appendix surgery and having to be put on a ventilator, my symptoms cleared up for a week or so. Then a crash, I could hardly breath much less speak or eat. I went to University of Miami hospital where the neurologist diagnosed me with MG within 10 minutes. All of this was pretty scary for me since I have never had any health issues other than a bad cold.
He started me on Prednisone and Mestinon that was (prednisone) increased over the months to 60 mg daily. Problems still persisted but better. Then another crash. I had stomach issues couldn't eat, I had lost 60 lbs. Major cramping in my stomach, actually my intestines, until my intestine blew a hole and a huge infection happened. I of course went to my local Dr. and he had me rushed to the hospital which was another order that ended after 30 days in the hospital. I switched neurologist upon the recommendation of my Dr. I moved to a Dr. at U of Miami and he began getting me off prednisone and moved me to Mycophenolate. That did it. It took 8 years of reducing the prednisone to get completely off of it. 20 years later, my Dr. thought maybe it was possible to get off the Mycophenolate but the the only way to tell was to do it. It took a few months to ween myself off and it seemed that it worked until it didn't I just had my first infusion of Vyvgart and awaiting the full course to take effect.
The point of all this is It takes a long time to get someone squared away. This ailment effects everyone different, so medications are going to effect everyone different. I wish I had better news after 24 years of experience but I don't. Before coming off the Mycophenolate I was 100% symptom free and this thread reminded me of how much time it may take to get back to that point again.
What a wonderful contribution to the board. Your story is so common and so poignant. Thank you. Myasthenia Gravis is a journey with so many twists and turns. You have given us a great reminder to never take it lightly or get overconfident. My long experience is that there is always another shoe going to drop.
drink and eat slowly
Amen to that. These MG attacks on bulbar muscles are particularly uncomfortable and sometimes dangerous. And even when you get them under control, eating habits must change. Take it slow. Chew everything thoroughly. Popcorn and small grain foods are out of the question. As for pills, I never take them until I have finished swallowing down breakfast. I take a Prilosec first, so that I can be sure acid reflux isn't interfering with my swallowing. I wait about an hour and take the rest of my pills with lots of water, never a carbonated beverage. The morning meds usually improve conditions so I can swallow other pills later in the day.
