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Starting My MG Journey

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.

Thanks,
Pete

  1. Hi Pete!! Welcome to the MG world!! Many of us struggle with extra mucous I have found that a nasal saline spray, make sure to brush my teeth and tong a few times a day helps me. As well as using an oral rinse (not a cleaner like scope etc.) to help keep my mouth moist for me helps keep this problem down. I too have urinary incontinence for me also bowel incontinence. I was diagnosed years ago with a neurogenic bladder from whatever undiagnosed at the time neurological condition I had... 20 years later diagnosed with Myasthenia Gravis. This next part is from my own reading. Then backed up for me by what and MG specialist told me. During an online conference. I had specifically asked about incontinence and MG. He said most Dr.s/Specialist forget this!! So, as we know striated muscle (muscle we can move on our own) in our body is not our friend when we have MG. Well, the bladder itself is fine!! It is, however, the last sphincter in both the bladder and the bowel that is striated muscle! And this is where the problem is for those of us with MG! That is the muscle that we all have to get "control over" to be potty trained as children!! For some people using mestinon or generic mestinon can cause urinary/bowel issues. These are all good things to possible talk with your doctor about. We are all different and you could have something else going on. Best wishes!! Sally Farrier...Myasthenia-Gravis.com (Team member). I am including an older article specific to men. As well as a personal experience article. https://myasthenia-gravis.com/living/urinary-incontinence-experience https://pubmed.ncbi.nlm.nih.gov/7416058/#:~:text=The%20male%20urethral%20sphincter%20is%20a%20striated%20muscle,which%20obscures%20the%20visibility%20of%20the%20whole%20muscle.

    1. Hi Pete! I'm glad to hear how quickly you were diagnosed and I'm glad to hear how well you are managing. I can only speak for myself, but I am certain my journey with MG began many years before I was diagnosed. As with many chronic illnesses, many of us can look back and say, "was that the disease?". My diagnosis came very quickly once I had a full on flare- but that didn't happen until I was 21 years old. I had been having trouble chewing for a long while, but I didn't realize that was an issue until the slurring started. Illness can be a trigger for a flare. In my case, I developed an ulcer in my mouth and that really got the MG angry!

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