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Junior Member
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Join Date: Feb 2019
Location: Brooklyn, NY
Posts: 8
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Junior Member
Join Date: Feb 2019
Location: Brooklyn, NY
Posts: 8
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Mestinon & Stomach Pain - Is There a Solution??
Hello to All!
New member here - I am grateful to find this forum. I have gotten a crash-course on Myasthenia Gravis due to my wife's recent diagnosis.
Her ocular symptoms began in late August of 2018, and upon finding an exceptional neurologist, he diagnosed her on-the-spot on her first visit in January of 2019. Blood tests confirmed what we already knew, with the presence of the offending antibodies. MG progressed to her jaws and neck, as well as general muscle fatigue and lack of energy as the day progresses.
Following a CT, she did not have Thymoma, though he did not rule out a Thymectomy at some point in the future.
After beginning her course of Mestinon, first 30mg 3x's per day for one week and then 60mg 3x's per day thereafter, she has been utterly bed-ridden with crippling stomach and intestinal cramps, with the requisite loose stool and frequent trips to the bathroom, though that doesn't provide her with any lasting relief, just more misery.
I know there are worse things with which to be stricken than Myasthenia, and we should be thankful. And I know that everyone's experience is different, from mild annoyance to life-altering.
What I'd like to know (and pardon my ignorance if this discussion has been exhausted elsewhere) is if others have had such a severe reaction to the Mestinon? And if so, is there any solution? Any relief?
It is completely devastating to watch her suffer so much and have no way to help her. Not to be sexist, but my only experience is through the eyes of a male, and to feel helpless, particularly in the face of a woman who is in very acute physical pain - in this case the woman I love and to whom I devote myself - well it is a very specific dimension of hell that I cannot endure without taking some kind of action.
That is why I am here. I am attempting to alleviate the suffering of the person I care about most in the world, and right now I feel totally inept. So I am asking the community, those of you who have already traveled down this road, for guidance, wisdom and help.
I know from research that most who have suffered from such severe stomach/intestinal pain were relatively pain-free after six months. She has only been on Mestinon for 3 - 4 weeks. She has also had bouts of IBS in the past five years or so, and I believe that is a factor in her body's intolerance for the Mestinon. But there must be SOMETHING out there to help her?
I am eternally grateful for anyone who takes the time to read my plea and offer support and suggestions. I have heard of two medications that may be relevant, so if someone has used either of these, I would welcome your own experiences.
They are: Glycopyrrolate and Hyoscyamine.
Do either of these help? And if so, do they help a little? Or a lot? Her pain seems most acute in the evening, after her third dose, though it follows her throughout the day. She does try to eat at least a little something, but as you can imagine, it is difficult to eat while suffering, and it often seems to only lead to more brutal trips to the bathroom. So kind of a damned if you do, damned if you don't situation.
Again, many thanks in advance for any and all support and guidance. I look forward to meeting all of you within this community. It appears that this is now a part of my life and will remain so. At least we can make the journey together.
Regards to all,
Daniel
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