1. < Autoimmune Diseases

Myasthenia Gravis: Share your treatment journey

Posted by socalgal @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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

MGMolly | @Erinmfs | Mar 23, 2020
In reply to @janyce "I appreciate your info. I wish you well. My Neurologist did tell me the first two..." + (show)
@janyce

I appreciate your info. I wish you well. My Neurologist did tell me the first two years after diagnosis are usually hardest. I paraphrase 😏
I pray your aggressive treatment will soon make a big difference in your symptoms.
I am beginning to notice big improvement a few days after my IVIG that last about 10 days.

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I feel somewhat lucky in that I've never had ivig. Neurologist told me that it's been 5 years since my initial diagnosis, and MG shouldn't be serious for me. I do have other psychiatric problems caused by MG, I went on a 50 mile bike tour with ocular MG (undiagnosed) nearly killed me and left long lasting damage.

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kiwigirl4 | @kiwigirl4 | Sep 14, 2020

Hi there, I would love to connect and share experiences with anyone who has Myasthenia Gravis. I was diagnosed 4 years ago and I’m Musk Positive. Thanks

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 14, 2020
In reply to @kiwigirl4 "Hi there, I would love to connect and share experiences with anyone who has Myasthenia Gravis...." + (show)
@kiwigirl4

Hi there, I would love to connect and share experiences with anyone who has Myasthenia Gravis. I was diagnosed 4 years ago and I’m Musk Positive. Thanks

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Hello @kiwigirl4, Welcome to Mayo Clinic Connect. You will notice that we merged your post with an existing discussion with the same name. If you click the VIEW & REPLY button at the bottom of the email notification it will take you to this reply in the discussion where you can meet other members with Myasthenia Gravis and learn what experiences they have shared.

@Erinmfs @mike1944 @gonefishinmt @jlind and others may have some experiences and suggestions to share with you.

@kiwigirl4 are you able to share a little more about your symptoms and if you have found anything that helps?

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MGMolly | @Erinmfs | May 7, 2021

I have my Mayo appointment setup for July! And one of these is on the schedule again. I've had just one. Anybody else experienced an EMG? Just looking to compare notes. I'm getting one for myasthenia gravis testing. Not sure if this goes under Neuropathy instead?

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chglobig | @chglobig | Jan 12, 2022
In reply to @gretagean "Thanks, @lynnes. That is helpful, as is the "shout-out" of support from others. I am responding..." + (show)
@gretagean

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...

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I know this is an old post but how is it going?
I have autoimmune disease on top of autoimmune disease on top of autoimmune disease… the “specialists” just keep adding diagnosis after diagnosis.
And the “autoimmune disease” has not affected nearly every organ in my body.
Any updates?

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1 reply
smilton | @smilton | Jan 13, 2022
In reply to @chglobig "I know this is an old post but how is it going? I have autoimmune disease..." + (show)
@chglobig

I know this is an old post but how is it going?
I have autoimmune disease on top of autoimmune disease on top of autoimmune disease… the “specialists” just keep adding diagnosis after diagnosis.
And the “autoimmune disease” has not affected nearly every organ in my body.
Any updates?

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Me too/ Myasthenis gravis-then graves- then ankylosing spondylitis and guess what- I have had these since early 20’s-I had a very bad car wreck at that time that masked all this other problems!!! Now add scoliosis/2 curves- and 5 cranial nerve palsy’s and you have my life- but I have taken care of myself-looking at me this all would be hard to believe/ I think God wants me to really straighten out this whiny world and yank a knot in their panties- it’s obvious he has a special plan for me 😁

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pikuptruk | @pikuptruk | Aug 12, 2022
In reply to @gretagean "Hi. Pretty certain I have I have MG, in absence of other differential diagnostic conclusions thus..." + (show)
@gretagean

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...

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You honestly do sound like you have many symptoms I have. This article is old… I’m curious, how are you now? Diagnosis? Treatment?

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ellen307 | @ellen307 | Sep 2, 2022

Sorry to here of your long journey with Myasthenia Gravis. did your neurologist do tensilon test??

I had this when I first began with droppy eye lids, eye Dr discovered this during recent exam. Dr put me
in the hospital and did INJECTION of blind study to see if I began to perk up which I did so I was put on
Mestion, did well then kept coming doing with Bronchites by then My Neurologist put me back in the hospital
Did read about surgery in case I would have to have it done, needless to say in 1971.
It was my Birthday gift to have sur gery gee thanks Dr G.
Remove my thymus gland and put me in ICU did welllong last went home but had to return 2 weeks late.
Have ups n down for few years. Now 2022 doing well just getting older. No drugs for Myasthenia Thank you

Ellen307

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1 reply
Pippa | @pmci | Sep 5, 2022
In reply to @ellen307 "Sorry to here of your long journey with Myasthenia Gravis. did your neurologist do tensilon test??..." + (show)
@ellen307

Sorry to here of your long journey with Myasthenia Gravis. did your neurologist do tensilon test??

I had this when I first began with droppy eye lids, eye Dr discovered this during recent exam. Dr put me
in the hospital and did INJECTION of blind study to see if I began to perk up which I did so I was put on
Mestion, did well then kept coming doing with Bronchites by then My Neurologist put me back in the hospital
Did read about surgery in case I would have to have it done, needless to say in 1971.
It was my Birthday gift to have sur gery gee thanks Dr G.
Remove my thymus gland and put me in ICU did welllong last went home but had to return 2 weeks late.
Have ups n down for few years. Now 2022 doing well just getting older. No drugs for Myasthenia Thank you

Ellen307

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It’s great that you no longer need drugs for the MG. Could I ask how and why you stopped? My symptoms have also completely disappeared and I’m really curious as to why, especially as my blood tests show that I still have MG.

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1 reply
lucylulu5280 | @lucylulu5280 | Sep 6, 2022
In reply to @pmci "It’s great that you no longer need drugs for the MG. Could I ask how and..." + (show)
@pmci

It’s great that you no longer need drugs for the MG. Could I ask how and why you stopped? My symptoms have also completely disappeared and I’m really curious as to why, especially as my blood tests show that I still have MG.

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Hi @pmci - I'd be interested in hearing what you and @ellen307 's think helped stop your symptoms. I was diagnosed in April 2022 with MUSK MG. At the time, my symptoms were only double vision and drooping eyelids. I thought I was having a stroke, so I went to the ER. During that visit on a Wednesday, I was also diagnosed hypertensive (for reference, I'm 54 and about 15 pounds over weight). On Friday, I started taking medication for my BP, eliminated all caffeine, gluten, animal products, and sugar from my diet. By Monday, my symptoms were gone and have not returned. I have never taken any medications for my MUSK MG. For now, my neurologist wants to see me every six months or if/when my symptoms return. I won't have antibody bloodwork again until Feb. 2023. While my diet may seem extreme (vegan/gluten free/sugar free/caffeine free), it's really not impossible - I can even eat in most restaurants! And worth the trade-off to not have MG symptoms. So just curious to know if you or anyone else here believes diet played a role in living symptom free.

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