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socalgal
@socalgal

Posts: 1
Joined: May 10, 2016

Myasthenia Gravis*

Posted by @socalgal, May 10, 2016

Hi everyone, Let me begin by telling you some of my story. In 2008 I was losing my eyesight and I couldn’t make my eyelids open. I had to manually lift them to do anything. I went to a neurologist, after seeing him for a few months, he told my that he believed l had Myesthenia Gravis. So he talked with a collegue and sent me to Salt Lake City to the Univ. Medical School and have a run of tests done by their specialists. He put me on a lot of meds I knew nothing about. At first I was on very high doses of Prednisone and couldn’t stop throwing up so I stopped taking them until I spoke with him. He decided that I should start again but at a lower dose until we found the one my body could tolerate. Well seven years later I am still on Prednisone plus Mesthinon, Cellcept and IVIG once a week now. Only to find out we should have stopped the Prednisone after about 8 months. Anyone with MG who would like to relate their stories, maybe there are things I can relate, too. I would like to know what is going on and what new things are out there. I have been eating much healthier and wanting more freedom to be with my family! Mostly to have a life besides Doctors and treatments! LOL Thanks for the time it took to read this. It’s my first time

REPLY

Hi @socalgal, and welcome to Connect. It sounds like you have been on quite the journey with your MG. I found some information from Mayo Clinic on lifestyle and home remedies (http://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/manage/ptc-20201028). How have you been managing your MG beyond medications?

I’m tagging @gonefishinmt and @johnbishop – two members who have recently been discussing their experience with Prednisone.

my father have face a disease of myathenia gravis problem what can i do.i really dont know and his health decline continuously

@saur1994

my father have face a disease of myathenia gravis problem what can i do.i really dont know and his health decline continuously

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Welcome @saur1994.
So sorry to hear about your father. Here is information about myasthenia graves from Mayo Clinic http://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/home/ovc-20200259

I’m also tagging @socalgal @iggeez1416 @whtwater @bea2377 @sunshine56 who have also talked about MG on Connect and can share experiences with you.

@saur1994 – what is your biggest concern with your father’s declining health at the moment?

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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@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!

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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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…

Liked by ColoradoAbbey

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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@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.

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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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.

@gretagean You have come to the right group! I’m sure you will find some others who can relate to your experiences. Best wishes on your journey.

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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Hello @gretagean,
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?

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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Hello @gretagean

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.

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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Thanks for sharing your story @lynnes.

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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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:
http://mayocl.in/2e1zql7

@gretagean, @lynnes, have your doctors ever recommended surgery as an option?

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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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…

@rickg

I HAVE OCULAR MG. HAD IT IN REMISSION FOR ABOUT 3 OR 4 MONTHS. CAME BACK WORSE THAN BEFORE. ON A VERY GOOD DIET LIKE BEFORE AND TAKING VITAMINS LIKE BEFORE BUT IS STAYING THE SAME. CAN ANYONE HELP ME

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Surgery has not been an option

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