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Myasthenia Gravis: Share your treatment journey
Autoimmune Diseases | Last Active: Oct 21, 2022 | Replies (93)Comment receiving replies
I am trying to find out if it's the Mestinon or the newly diagnosed MG: storm of tiny twitches in the thousands of eye muscles, painless; same for my face....very strange feeling. At least people don't notice that. More upsetting is after using my hands to grip something, say, to pull wheeled luggage, my hands will shake so violently I can't reach out to grasp a railing, or hold a phone--I might as well be doing a doing a hand flutter-flapping dance. All I can do is stick the possessed appendages in my opposite armpits and and hold them there a few minutes, until they recover enough. Meanwhile, I'm "hands-free" in the hotel lobby, refusing all offers of assistance, just standing in the flow of traffic with my bags, hands in pits, smiling. Is this the drug (240 mg mestinon only, no prednisone) or the disease?
Replies to "I am trying to find out if it's the Mestinon or the newly diagnosed MG: storm..."
Hi, K. Yes, I think its the generic Mestinon. I had a dramtic improvement when my dosage was increased from 180mg to 480mg/day. Fatigue nearly completely gone eyelid virtually normal, eye control 85 to 90% normal. --hand tremors completely gone!! This lasted 6-7 weeks. Then I "busted" my AIP low FODMAPdiet and had a big bowl of potato chips. It may have been the oils or the potatoes or contaminants, but 4 hours later, my lid dropped dramatically. Its been a week and I'm still fighting to gain back the ground I lost. The tremors are nearly gone again, but the fatigue that returned is stubborn. Is this coincidence or an immune trigger? By timing coincidence, I just got blood tests back for food allergies: low responses to most things, nothing for potatoes. Only wheat is a strong allergy (I've been GF for decades). Heard anything like a strong food reaction tied to MG flare up?
Hi @gretagean,
From my internet research, what you eat can greatly impact an autoimmune condition like myasthenia gravis, and avoiding certain foods can avoid irritating an already malfunctioning immune system. Although I didn't find any specific trigger, I wonder if it could be the amount of sodium in those potato chips that caused a reaction?
I also came across this great patient story from Mayo Clinic, about a body builder and how he regained energy after surgery for Myasthenia Gravis; you can read it here: http://mayocl.in/2kbPJjM
According to information from Mayo Clinic, low levels of potassium can lead to fatigue, (http://mayocl.in/2eV6JbW); has the doctor checked your potassium levels?
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Hi @gretagean,
What a lovely sense of humor in your message, even though it must be so frustrating to have these symptoms!
I've found a few members who have talked about Mestinon in the past; allow me to introduce you to @nan45, @julian130, @seashellgal, @whtwater, and @hope2bhealthy. I hope they will give you their perspective about taking the drug.
@gretagean, I noticed a few comments from other members about "the generic version of Mestinon; " is that what you are taking? Have you come up with any methods to cope at home with the shaking of your hands?