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.

lioness | @lioness | Jul 4, 2019

@Erinmfs Just about missed your new handle lol

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janyce | @janyce | Oct 3, 2019
In reply to @Erinmfs "Does anyone use this Discussion Thread for Myasthenia Gravis? I came back to it because I..." + (show)
@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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Mentor
John, Volunteer Mentor | @johnbishop | Mar 2, 2020
In reply to @mike1944 "Looking for others diagnosed with generalized MG." + (show)
@mike1944

Looking for others diagnosed with generalized MG.

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Hello @mike1944, Welcome to Connect.
You may also be interested in the following article from Myasthenia Gravis News:
-- https://myastheniagravisnews.com/generalized-myasthenia-gravis/

Are you able to share a little more about your symptoms and questions you have?

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mike1944 | @mike1944 | Mar 2, 2020

Looking for others diagnosed with generalized MG.

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2 replies
Ethan McConkey, Moderator | @ethanmcconkey | Mar 5, 2020

Hi @mike1944 I wanted to join @johnbishop in welcoming you to Connect. You may have noticed I moved your post to this existing discussion on Myasthenia Gravis so that you can connect with fellow MG patients like @janyce @Erinmfs and @jlind in hopes they will return and share their experience.

Back to you @mike1944, is this something you were recently diagnosed with? As @johnbishop asked, what symptoms are you currently experiencing?

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janyce | @janyce | Mar 14, 2020
In reply to @mike1944 "Looking for others diagnosed with generalized MG." + (show)
@mike1944

Looking for others diagnosed with generalized MG.

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In my earlier post, I described my getting a diagnosis of MG last year. I was hospitalized three times last year. Each time, I received several IVIG. In early February this year, I was very sick with a UTI and upper respiratory problem but not hospitalized.
My meds for MG are IVIG every 4 weeks (just changed to every 3), Mycophenolate 500MG 2 in morning 2 in evening and Prednisone 10MG daily.
I am 81 years old with Type 1 Diabetes, and don’t expect to ever be “perky” ha!
But this past month has been ok. I had 3 weeks with pretty good vision. So, hope springs eternal😊.
I wish you well.

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1 reply
MGMolly | @Erinmfs | Mar 14, 2020
In reply to @janyce "In my earlier post, I described my getting a diagnosis of MG last year. I was..." + (show)
@janyce

In my earlier post, I described my getting a diagnosis of MG last year. I was hospitalized three times last year. Each time, I received several IVIG. In early February this year, I was very sick with a UTI and upper respiratory problem but not hospitalized.
My meds for MG are IVIG every 4 weeks (just changed to every 3), Mycophenolate 500MG 2 in morning 2 in evening and Prednisone 10MG daily.
I am 81 years old with Type 1 Diabetes, and don’t expect to ever be “perky” ha!
But this past month has been ok. I had 3 weeks with pretty good vision. So, hope springs eternal😊.
I wish you well.

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I wish there was a not heart, as I'm sorry for your ivig story. There was a time when I should have had ivig I think, I was misdiagnosed, having trouble breathing.

My MG complaint this week is that the mg has affected my good eye, I cant see! I go for walks, but I only see the sidewalk ahead of me. But I am breathing and walking!

Thank you for sharing.

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mike1944 | @mike1944 | Mar 23, 2020

I was diagnosed with generalized MG 4/24/2019 and have been dealing with the challenges ever since. I am currently on 60mg prednisone, 3,000mg Mycofenolate, 60mg Mestinon, and a weekly IVIg infusion. Spent 6 weeks in the hospital when diagnosed and have been hospitalized 3 times since.
I apologize if this is too much information.

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2 replies
MGMolly | @Erinmfs | Mar 23, 2020
In reply to @mike1944 "I was diagnosed with generalized MG 4/24/2019 and have been dealing with the challenges ever since...." + (show)
@mike1944

I was diagnosed with generalized MG 4/24/2019 and have been dealing with the challenges ever since. I am currently on 60mg prednisone, 3,000mg Mycofenolate, 60mg Mestinon, and a weekly IVIg infusion. Spent 6 weeks in the hospital when diagnosed and have been hospitalized 3 times since.
I apologize if this is too much information.

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Have you seen that the MGFA has cancelled the annual conference due to covid19?

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janyce | @janyce | Mar 23, 2020
In reply to @mike1944 "I was diagnosed with generalized MG 4/24/2019 and have been dealing with the challenges ever since...." + (show)
@mike1944

I was diagnosed with generalized MG 4/24/2019 and have been dealing with the challenges ever since. I am currently on 60mg prednisone, 3,000mg Mycofenolate, 60mg Mestinon, and a weekly IVIg infusion. Spent 6 weeks in the hospital when diagnosed and have been hospitalized 3 times since.
I apologize if this is too much information.

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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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