I was setting this down to help my own recollection, but I find I have a lot of questions, so maybe someone would like to comment on some of the things I’m not sure of. Thanks for reading.
I’m a 75 year old male. There are a few symptoms that I’m not sure come from myasthenia gravis, but from reading other posts here I think they could be. For example: a) Around January of this year (2022) I started having serious urinary incontinence. I had my prostate removed (cancer) 12 years ago and have had no urinary problems at all until just this year. Is it from MG, or from being 75? b) Recently (past 6 months or so) I have been having fairly thick, clear mucous in my throat from time to time. I didn’t think much about it, until I started reading about MG.
The reason I bring up these two items is that I was diagnosed with MG in July, but I wonder if it may have started in January and I just didn’t recognize the signs. Of course it really doesn’t matter - I have MG now - but it would be nice to know just how and when it started.
In July I had Covid, a pretty mild case. A week later I went on a driving vacation and one afternoon my eyelids were drooping enough to make it difficult to drive. But I stuck with it and the problem went away for a while. A couple of weeks later it happened again, this time I couldn’t see at all and my wife had to finish driving us home. That was scary - what if I had been alone?
At that time I had not even heard of myasthenia gravis; I thought I just had drooping eyelids from old age. I went to the first ophthalmologist who could see me, and she looked at my drooping eyelids and was talking about all the surgeries that could be done. (She is also a plastic surgeon.) I told her that I had had Covid, and that the ptosis had happened only one week after, and it came on more suddenly than I would have expected for an age-related malady; could there be another cause? She didn’t think Covid was a factor but she said there were blood tests for a thing called myasthenia gravis. She was teaching a young doctor and was explaining stuff to her, which, except for some doctor-speak which I couldn’t translate, helped me to understand most of what was going on. She then did the ice-cube-on-the-eyelid test and she immediately stopped talking about surgery and said, “I need to order those blood tests.”
Some time during all of this I had noticed my jaw muscles getting really tired from chewing, but I don’t remember when that showed up.
Well, the tests came back positive for MG. I met with my PCP and he referred me to a neurologist who checked me over, looked at the test results and said that I definitely had myasthenia gravis. He ordered a CT to check my thymus. That was negative for thymoma but it showed a couple of unrelated things that my PCP is working on with me.
So that’s where I am now. I’m taking Mestinon and tweaking the dosage to maximize the effect on my jaw muscles while minimizing diarrhea. My eyelids are fine unless I get really tired, at which time my wife says they droop, as does my whole face. But it’s not enough for me to notice.