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Urinary incontinence and myasthenia gravis: What has your experience been?
Urinary incontinence can affect people for many different reasons and is not considered a characteristic symptom of myasthenia gravis. Still, people living with MG experience bladder issues.
Have you dealt with urinary incontinence while living with MG? Have you identified any non-MG causes contributing to it, and were there treatments, lifestyle changes, or strategies that helped?
Or do you believe that it is linked to your MG?
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11 Replies
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Incontinence has been a long term issue for me. Increases in Mestinon and weakness often cause incontinence which increases with the amount of weakness. When my MG is well controlled, I have no issues so I’m certain that this is entirely related to MG. There’s little I can do to compensate except using pads to catch leaks and making sure to empty my bladder often. And, of course, accept that accidents will still happen.
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Interesting, Dr’s think my issues are age related, this shines a different light on possibilities. Will have to track my symptoms compared to MG status.. A topic to discuss with my urologist.
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Had a prostatectomy in 2014 with some minor leakage. Small pads were sufficient. Then droopy eyelid and double vision and significantly greater leakage happened one month after having covid19 in 2022. Diagnosis was ocular MG which is controlled with one 60mg mestonin in the morning. However now I need Depends with extra heavy guard pads that I can change without removing the Depends. Normally 3 times a day. Makes playing golf interesting, but I continue. I’m 84. I think my sphincter doesn’t respond like it used to because of the MG.
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I started having bladder incontinence last year after several months with multiple MG crises and hospital stays. My neurologist said it isn’t a typical symptom but she had another MG patient having the same issues. It subsided eventually but still comes back from time to time just like my other MG symptoms.
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Bladder issues were among the symptoms that appeared overnight for me just prior to my MG diagnosis. Mestinon certainly made it worse. When my MG symptoms are more controlled, so are my bladder issues. My neurologist has been hesitant to consider this part of the MG, especially as a middle-aged woman who has had children, but I have never had issues until my symptoms started.
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I’ve had the exact same experiences and my neurologist has stated that if I felt the pyridostigmine was causing it (increased meds = increased incontinence) that we could change meds. Problem is that I don’t want to change to any of the three drugs he suggested; they sound worse than leaks.
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I know my incontinence issues weren’t caused by mestinon because I don’t take it. It doesn’t help me.
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I haven’t had too much issue with this but it makes sense that it would be related to MG given that the condition affects voluntary muscles and voluntary muscles are involved in bladder control. I don’t know why doctors would dismiss a possible connection between MG and leakage problems.
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I have been having this problem for a while, though my MG has been more troubling in weak muscles and falling in late day, plus more double vision, I just didn’t think of bladder as connected to the MG muscle weakness. My doctors didn’t either, but my neuro isn’t an MG specialist, I only told my GP of the troubles, she is thinking kidney which is frightening. Thanks for noting this possible link to MG, it’s tiring and troubling. I hope to get back on a helpful MG treatment again.
Take care all, enjoy your autumn!
Kate
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I have MG since 2020; I am 79 old years.
I have had to increase the size pads & underwear gradually over these last few years.
Now when I feel the need to go, I stand up and the leadage begins slighty and I better get to a toilet soon or else a full stream ahead. My incontience has increased drastically over these last few years. I’m on Ultomiris and prenisdone (5mg).
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Ive taken Oxybutynin for bladder control years and it was a great control med but that was before i was diagnosed with gMG. I stopped taking the Oxybutynin when I was diagnosed because I read that it was not a good med to take with gMG. I take Mestinon for gMG. The incontinence is so bad now.
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I have had urinary inconsistency for years. I recently got diagnosed with MG and had a flair and I ended up in the hospital. I had to have an infusion. I was so surprised that the infusion greatly improved my bladder issues. I’m getting ready to start Vyvigart on Wednesday. I’m hoping it will continue to improve this issue.
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