Anyone familiar with autonomic nervous system dysfunction in MG?
I've had myasthenia gravis since '97 mainly affecting eye muscles but in the past swallowing and speech has been affected occasionally especially when tired. The main issue daily is getting super fatigued after doing the simplest things.
Last few years I've noticed I'm less able to cope with situations which I primarily put down to menopause ... however it's only gotten worse not better. After researching it appears MG patients can be affected by autonomic nervous system dysfunction which I think was masked pre menopause but now post menopause don't have the buffer anymore. Does this sound familiar with anyone? Any suggestions re supporting nervous system as it's like I literally can't cope with even basic family discussions without getting overwhelmed stressed and irritated..
Thank you so much, David... I was hoping for a miracle non-medical solution, so it's super disappointing to hear that immunosuppressants and antidepressants are the answer. How are you managing with those? Presumably, those are better than the alternative symptoms of ANS dysfunction?
I take the immunosuppressant azathioprine. It's one of those developed to retard rejection of transplanted organs. There are several others. I have no side effects from azathioprine, and it keeps me mobile, out of the hospital and pretty much stable one day to the next. It also totally eliminates the need for pyridostigmine and all but a tiny daily dose of prednisone. You have to take it for several months before it becomes effective. thank you again 😊
Every MG patient should look at this emerging field of study. AChR antibody induced autonomic system dysfunction explains nearly the whole array of unusual MG symptoms: Digestive problems, urinary incontinence, bowel issues, balance, brain fog, shortness of breath, heart function, vertigo and many, many others. You can google "Mysathenia Gravis and autonomic system." Then click on the little "frontiers" tag. It will take you to the full clinical study. And thanks to Lula for raising this topic.
Hi Lula. A clinical study of 53 MG patients in Poland found 38% of them with some degree of autonomic dysfunction. So it's pretty common and, since I have it too, probably not related to menopause. The acetylcholine-binding antibody can attack your critical supply of acetylcholine wherever it finds it, and acetylcholine is used in both voluntary and many involuntary muscles, your digestive system, your autonomic system, your heart and even your brain. My doctor prescribes an anti-depressant as part of my MG medicine regimen. Also a powerful immunosuppressant. There is no miracle solution. Keeping your regular MG symptoms well controlled through an aggressive treatment program is the best I know to do.
You can find the full clinical study at:
www.frontiersin.org/journals/neuroscience/articles/10.3389/fnins.2024.1415615/ful
