Myasthenia Gravis: Share your treatment journey
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.
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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
You are welcome. @gretagean
@gretagean i can speak from my personal experience, I have other autoimmune diseases too. Ulcerative Colitis is the other one that gives me the most aggravation. I was told by one doctor that I had celiac disease as well, but my new University of Colorado docs have said my celiac test is negative. I’ve just learned that I have MGUS and I’m being tested for multiple myeloma. Apparently they are linked with autoimmune diseases. I will have the second round of test results back sometime this week.
The way I deal with having a full “dance card” is the same as I would at a dance! One dance at a time. It has been an effective way to live my life so far, but I admit this last one is knocking me off my normal way of dealing, so I understand your post very well. Re your question about nightshade plants & diet. I have eliminated grains (NO wheat), legumes, processed food, all oil except olive oil, & dairy. I do not seem to have a problem with peppers or potatoes. I did this elimination by trial & error over a lot of years.
Let us know how you are doing.
Sending you positive vibes
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?
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?
I have posted earlier in the MAC group but have just this week been told i need to be tested for Myasthenia Gravis. aaaaaaaaargh!????
Eye Dr. thought it was necessary to git er dun now. Have appt for bloodwork on the 5th of Jan. … fasting …. but i have learned that it does not always show up in bloodwork. ????? The bloodwork will not be back when I see my primary care doc on the 10th. Have hip replacement surgery scheduled for the 23rd. A friend whose mother struggled with and finally died from this auto immune “thing” recommended a Dr. James Howard … neurologist at UNC in Chapel Hill. i live five hours away! I have put in place all that was suggested to me in the forum on MAC. Have a date with ID doc in winston on the 6th. Also deal with PPS .. post polio syndrome. I am 76 years old an got the Polio virus when i was 4 during the epidemic here inN.C. Spent 7months in the “camps” that have been called The Miracle of Hickory, N.C. Learned to walk again an my parents NEVER treated me as a victim of anything … ergo i have never percieved myself that way! Have always been VERY active and an activist! . I have been attributing things that are new and “not nermal” HO! fer me to PPS. Am not sure anymore what is the right question to ask! My friend said Dr. Howard invented the machine that can test for this “thing” that will not make you feel lak you b gittin electrocuted! I have had tests that feel just like THAT several times in the past. PPS being the answer. Here’s a question. Do you know someone in Winston Salem, perhaps, a neurologist who is closer? Am supposed to have hip replacement surgery on the 23rd Jan. 2017 after having had to cancel surgery the 19th of this month as i got sick! I am SO GREAT FULL for this site. Thank you for this site!!!!!!!!!!!!!!! Merry Merry evrybody!