Myasthenia Gravis*

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

Liked by grammlyn

wholly cow, this discussion was awhile ago. I have officially been diagnosed with ocular MG, but I have had trouble breathing, tingling in my left side, swelling of my feet, tingling in my feet. I also had one episode of difficulty swallowing. I had a terrible flare of MG in the fall, but my eyes are improved, no drooping, just some double vision. I came out here to see how many MG folks we had and if there's a discussion going on. thank you for pointing me this direction with this thread.

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I may or may not have MG, as one Mayo test was positive and a follow up test was negative. I follow this discussion and have read various items about MG. The neurologist wants to do another EMG, but I'm not sure why. My symptoms are being tired frequently, but nothing ocular, swallowing, or breathing. Hand swelling occurs but no real pain. I just use resistance putty to keep hand strength. I do understand that some people who have MG don't show positive on tests, so we keep looking for what this may be. I'm interested in others experiences with MG. How long did it take to get a diagnosis? What were the progressions, and, of course, how are they coping with meds or other treatments. Thanks to Mayo for this discussion group!

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@socalgal Welcome to our caring community I'm sorry you are going through M G Here,s a website may help https://medline.com/M G

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Thank you. I'm still under observation, I suppose, but no real symptoms of MG have appeared. I have an eye doctors appointment next week followed by my neurologists evaluation. My main concern is the depression that has accompanied all these tests and speculation. We'll see what happens.

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I just saw a video in a new MG discussion by @user_chdb5e8ac that I thought members in this discussion might be interested in seeing.

> Groups > Autoimmune Diseases > Myasthenia Gravis video contest from the MGFA
https://connect.mayoclinic.org/discussion/myasthenia-gravis-video-contest-from-the-mgfa/

Liked by Erin

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@valdezamya

Greetings, I'm 43 yo female with persistent fatigue and weakness for four weeks, which did improve for three days. My blood tests (stratified not performed) were negative for mysthania graves, thyroid, adrenal fatigue, vitamin deficiency, etc. No pain. When I engage in a home test of holding my arms out and looking up (which my neurologist did not have me do), my body/arms/head "sink" from fatigue. I experience positive results from mestonion. I could not tolerate a full EMG due to severe pain–first half of EMG normal. MRI of the neck was normal. Any advice? Second neurologist opinion? Current neurologist recommends PT or CBT. I plan to try PT. Thank you for your time. Sincerely, Amy

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Hello @valdezamya, welcome to Connect. I'm tagging our moderator @ethanmcconkey to see if we should move your post to another existing discussion where it will have more visibility and you can meet other members with similar symptoms.

> Groups > Autoimmune Diseases > Myasthenia Gravis*
https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/

There is another discussion that you may also find helpful and want to read through.

> Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

Are you able to share which symptom bothers you the most?

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@valdezamya

Greetings, I'm 43 yo female with persistent fatigue and weakness for four weeks, which did improve for three days. My blood tests (stratified not performed) were negative for mysthania graves, thyroid, adrenal fatigue, vitamin deficiency, etc. No pain. When I engage in a home test of holding my arms out and looking up (which my neurologist did not have me do), my body/arms/head "sink" from fatigue. I experience positive results from mestonion. I could not tolerate a full EMG due to severe pain–first half of EMG normal. MRI of the neck was normal. Any advice? Second neurologist opinion? Current neurologist recommends PT or CBT. I plan to try PT. Thank you for your time. Sincerely, Amy

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Hi,

I have myasthenia gravis, and my lab tests were negative in the beginning. I had 3 MuSK antibody tests before one came back positive. I had myasthenia gravis 2 years before it was properly diagnosed. I had weakness in my arms and legs, not any longer but I'm not as active as I once was. My EMGs were all negative. are your eyes drooping, do your eyes fatigue with looking up? I couldn't not tell from your writing….. Good luck to you! 🙂

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Greetings, I'm 43 yo female with persistent fatigue and weakness for four weeks, which did improve for three days. My blood tests (stratified not performed) were negative for mysthania graves, thyroid, adrenal fatigue, vitamin deficiency, etc. No pain. When I engage in a home test of holding my arms out and looking up (which my neurologist did not have me do), my body/arms/head "sink" from fatigue. I experience positive results from mestonion. I could not tolerate a full EMG due to severe pain–first half of EMG normal. MRI of the neck was normal. Any advice? Second neurologist opinion? Current neurologist recommends PT or CBT. I plan to try PT. Thank you for your time. Sincerely, Amy

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Hi @valdezamya and welcome to Connect. You may have noticed I moved your post to this existing discussion on myasthenia gravis so that you can connect with others who have similar experience. Simply click VIEW & REPLY in your email notification to get to your post.

I wanted to join @johnbishop and @user_chdb5e8ac in welcoming you to Connect, and also introduce you to fellow Connect members @jolander @tammy72 and @dragonfly430 as they have all mentioned MG in the past. I also wanted to tag @jlind as they have undergone testing for MG recently.

Back to you @valdezmaya I wanted to repeat John's question, in asking for you to share any symptoms that bother you the most? Also, how soon would you begin PT?

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Does anyone use this Discussion Thread for Myasthenia Gravis? I came back to it because I was searching for IVIG. my local internist insisted I find a local neurologist to treat any crisis situation I may encounter,(not likely I'll make it to Rochester is respiratory distress should it happen) so I went to a local neurologist here in my community. He instantly suggested I start ivig. I was furious. My Mayo doctors never suggested for me to have ivig or plasmapheresis.

So, I'm here to ask, do you have ivig or plasmpheresis treatments, and if so, in your opinion, do they help you?

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@Erinmfs Just about missed your new handle lol

Liked by Erin

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@Erinmfs

Does anyone use this Discussion Thread for Myasthenia Gravis? I came back to it because I was searching for IVIG. my local internist insisted I find a local neurologist to treat any crisis situation I may encounter,(not likely I'll make it to Rochester is respiratory distress should it happen) so I went to a local neurologist here in my community. He instantly suggested I start ivig. I was furious. My Mayo doctors never suggested for me to have ivig or plasmapheresis.

So, I'm here to ask, do you have ivig or plasmpheresis treatments, and if so, in your opinion, do they help you?

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In April of 2017, I had symptoms of stroke but eventually was diagnosed with Bell’s palsy. Six months later, after seeing Opthalmologists for dropping eyelid, I began seeing double. After much testing including blood tests for MG (negative) it seemed there was no answers. I went to another Opthalmologist who did something with ice on my eyes and he was sure that I had MG. In April of 2019, new Neuro diagnosis of Ocular MG.
This summer I became pretty sick with cough and shortness of breath. Bronchitis and the pulmonary dr arranged for me to see Neurologist who is now treating me for generized MG.
I have had 6 IVIG infusions. I am hopeful.
I am also on steroids and have begun Mycophenolate.
Long story and to answer your question, yes I have had IVIG but time will tell if It will help.

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