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Myasthenia Gravis: Share your treatment journeyAutoimmune Diseases | Last Active: Oct 21, 2022 | Replies (93)
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Replies to "I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK..."
Hi. Pretty certain I have I have MG, in absence of other differential diagnostic conclusions thus far. Only sf emg left. On mestinon for 6 weeks, mostly ptosis, eye control problems, sudden onset daily severe overall fatigue, right forearm and hand stability loss of of contol, with tremors, flapping.
Now I get “storms” of micro twitches throughout my entire eye orbit muscles…todaytoday it began in my upper lip/face area below my nose. No one can see unless they look very closely, but it feels very strange, and it goes on for an hour or longer. Is this MG or mestinon? Ideas? Wondering what might I I expect next…
@gretagean Welcome to Mayo Connect and thanks for responding to this discussion. You pose some interesting symptoms and questions. Since I’m not a medical professional and don’t have this disorder, I can’t offer you any thoughts. There are undoubtedly others in our Mayo Connect community who might be able to respond, though.
Thanks, Rosemary. Yes…I’m not looking for medical advice so much as seeking to connect with others who have experience with MG. I know this is always a personal experience but right now my experience feels quite isolated, as I am from a small sized city, many hours from any large population that could support an MG group. I would like to engage with the community.
Welcome! We’re so glad to have you on Connect.
I’m tagging @socalgal, @iggeez1416, @whtwater, @bea2377, and @sunshine56 who have talked about Myasthenia Gravis on Connect, and can hopefully share their experiences with you.
If you would like to know more about Mestinon, here is some information from Mayo Clinic about treatments, medications used to relieve symptoms of MG, including Mestinon; http://mayocl.in/2eV6JbW
@gretagean, we look forward to getting to know you and supporting you; how have you been managing your MG beyond medications?
I have ocular & regular MG. I’ve been on both Mestinon & IVIG Gamunex for a number of years. 2 & 1/2 months ago I stopped the IVIG for other medical reasons & have been trying to control my ocular MG with Mestinon. I have those twitches you are talking about, sometimes in the entirety of the muscles around my eye. It feels like it is squeezing my eye shut. That symptom was controlled better when I was doing both the IVIG & the Mestinon. I take the Mestinon every 6 hours & it works for less than 6 hours. In my experience, that symptom is not from the Mestinon, it is the MG. The Mestinon relieves it for a short time plus helps with my over all fatigue. I would be happy to communicate with you. I also live in a small town without a support group. If you would like to talk, feel free to send me a message.
Thanks for sharing your story @lynnes.
I’d like to add my thanks too, @lynnes. This is some great insight that you’ve given.
You’ve probably searched the internet for information, and Mayo Clinic has some very detailed care options for MG, which I hope you will find helpful:
@gretagean, @lynnes, have your doctors ever recommended surgery as an option?
Thanks, @lynnes. That is helpful, as is the “shout-out” of support from others. I am responding well to mestinon, I think but I’m guessing dosages will be increased in the future. They initially put me on prednisone when they suspected Bell’s palsy but that did nothing so I will be somewhat dubious if we try that in the future…but I don’t have bad side affects so I’ll again consider that good luck! My concern during the “11pm” hour (when I always am at my lowest optimism–or perhaps the most realistic?) is, this is now my 4th and most serious autoimmune condition. I am fortunate, again the others are really not in any way debilitating, nor a health risk–NOW that I am aware of them and manage them: from inconsequential working up: 1.Renauds (where you lose circulation to fingers or toes, caused by cold or stress, but capillaries remain constricted); 2. severe gluten intolerance or celiac-can’t tell which because I’ve lived gluten free for 20 years and cannot survive a wheat diet long enough to produce a valid gluten challenge. And 3.Hashimoto’s (autoimmune hypothyroidism). This appears to have started2-3 months before 4. MG. My concern NOW: WHAT’S next? I had Hepatitis A in the past…and Epstein Barr. Hate to borrow trouble, but darned if I’m not feeling deja vu all over again: 1. Discomfort under right ribs, 2. Zero appetite first half of day for weeks, 3. Whacko ibs (constipated,switches to opposite then back again), nausea. Tired, tired, tired. Well, hard to untangle all this from the confusing introduction to my new “MG body” but….from what I read of autoimmune Hepatitis predisposition, I sound like a perfect checklist. I do not want another autoimmune condition. I want to calm my system down. Thoughts on immune system and reactions to nightshade plants ( tomatoes, eggplants, peppers?) Any other thoughts on calming down my system? I have a happy life, suuportive spouse, lots of good things around me. I am now napping like a 90 year old and proud of it! 😀 etc… gonna get gung ho about loving the sh*t out my new MG life, guys, because this IS the one I’ve got!! (Just prefer not manage any more on my dance card). Advice welcome….positive vibes too…
Surgery has not been an option
@rickg Welcome to Mayo Connect! I am sorry to hear of your problem with Ocular MG, while I don’t have this disorder, I do have a Parkinson disorder whereby I have visual problems so I can relate on some level to what you are saying. @colleenyoung is a Moderator here at Mayo Connect and I’m sure that she will help you find some others who might be able to relate to your situation. In order to get to know you a little better, please feel free to share a little about yourself. For example, how long have you had Ocular MG? What type of symptoms do you have? What does your doctor say about the return of your symptoms? We look forward to getting to know you and supporting you!