u/samsammies6969

I’m sure there’s a selection bias, and that most people with experiences like this aren’t spending much time on the MG subreddit, but regardless, has anyone just kind of gotten better without medication? Like maybe your MG came on as a flare, and then when the flare went away you were just kind of normal again? I ask because I think my MG was triggered by extreme physical exhaustion over the course of several weeks- basically I did way too much physical labor while not sleeping well and also drinking and eating poorly. I’m wondering if I just prioritize rest for a while and get proper nutrition/sleep if there’s a chance this all just goes away.

MGAthlete on YouTube and Instagram has a med-free remission story, but it takes place over the course of several years, and he hasn’t been active in a while. Anybody else out there had anything similar?

Edit: I’m very aware there’s no “cure”, I’m not interested in the language of cure vs remission, I’m interested in a life that doesn’t “feel” like it has MG. As I said, people like MGathlete, or Daniel Moshe, who did manage to put their MG into remission without meds. I’m just looking for people’s experiences with this sort of thing.

*TLDR* at end, but for those who are curious about details

I operate a moving company, and had worked 8 long days in a row, and immediately thereafter went on a family trip where we were staying up late, drinking, waking up early cause of kids and overall excitement and activity, and by the end of it I was exhausted. I started having what I considered migraine symptoms, which I’d never had before- sensitivity to light, pain behind the eyes, and smiling was weirdly difficult.

I didn’t think too much of it because I just figured I was wiped from work and the trip, but then on the last day of our family trip I was speaking to a customer on the phone and my speech just collapsed on me- I was slurring and couldn’t say certain words completely out of nowhere. I hung up the phone and collected myself, and a few minutes later my speech was fine, so I returned to my family and basically forgot about it, and it didn’t happen the rest of the evening.

Then the next day, it was happening again, and it kept happening. After speaking for more than a minute or so normally, I’d start slurring and lisping. I could rest for a minute or so and my speech would return to normal, but reliably for the next few days if I talked for more than a minute I’d start slurring pretty bad. I also still felt sensitive to light and was having trouble smiling. Chewing also became difficult.

So I went to the er, they ran a ct scan which came back normal, and considering the fact that it seems to be fatigue-related, that my speech problem is not consistent but gets worse the more I use it and then better when I don’t, the doctors are assuming it’s MG- so currently we are waiting on bloodwork. In the meantime, they prescribed my 30mg pyridostigmine 3x daily, and 20mg prednisone.

I returned to work, and found that moving furniture was suddenly extremely difficult. So I kind of limped my way through a few days before I cancelled the remainder of my jobs for the month.

So, I’ve got an appointment scheduled with a neurologist for a month from now, and in the meantime I have a ton of questions, while still awaiting formal diagnosis. As of right now, the medications don’t really seem to have helped.

*TLDR* I randomly started having slurred speech that gets worse the more I talk and gets better when I don’t speak, trouble chewing, muscle weakness, and sensitivity to light.

So some questions:

First off- does it make sense for me to be on prednisone? The more I read about it, the less I like what I see. I don’t know if these symptoms are really a crisis- my speech gets slurred, chewing is hard, and my muscles are weak, but I’m reluctant to go hopping on something that could give me diabetes and osteoporosis and a lifelong inability to produce cortisol and 120 extra pounds when there could be other options, and it’s not as if I’m having trouble breathing.

Secondly- I operate a moving company. Is it reasonable to think that there’s a way that this all resolves that allows me to continue working? Do people with MG ever go back to doing heavy lifting and strenuous physical labor? Because not only am I suddenly not working, but my life also suddenly just became a lot more expensive, and I really don’t know what I’m going to do if I can’t operate my business.

Third- I’m a singer, and basically the only thing I have in my life that really satisfies me on a personal level, is writing songs and recording them. Suddenly that’s looking like it could might not be an option any more with how bad my speech slurs. How many people see their speech issues completely disappear?

Four- when google ai calls MG “episodic”, what does that actually mean for people? Are there people for whom it comes and then just kind of goes away on its own?

Thanks in advance