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What is your myasthenia gravis (MG) story? Let's share!

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What is your myasthenia gravis (MG) story? Let's share!

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Courtney_J

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23/11/2021 at 17:46

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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Hello everyone,

Welcome to the myasthenia gravis discussion group on Carenity! emoticon cute

This space is dedicated to you to share your questions, stories, fears, advice, and much more with other members!

As you know, the diagnosis of a chronic illness, especially if it's rare, can be a life-changing experience. So let's talk about it together!

What was your diagnosis experience like? How long did it take you to get your diagnosis? What symptoms did you have that made you feel like something was wrong? How are you doing today?

Feel free to share your story here!

Take care,
Courtney

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MaggieMG

Edited on 18/11/2022 at 16:13

MaggieMG

Last activity on 23/03/2022 at 10:02

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@Courtney_J My symptoms came on rather suddenly, almost overnight. I thought at first I was having a stroke because you hear about the face drooping when that happens. Then I thought it was stress or fatigue but then when it didn't go away I knew it was something else. I went to my GP who told me to go to an eye doctor. Then there was some back and forth with the GP who finally ordered tests for me. It was awful waiting for the test results.

What is your myasthenia gravis (MG) story? Let's share! https://www.carenity.co.uk/forum/myasthenia/living-with-myasthenia-gravis/what-is-your-myasthenia-gravis-mg-story-lets-share-4421 2022-03-23 10:08:01

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Courtney_J

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12/01/2022 at 16:18

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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Hello all,

How are you doing? Have you seen our myasthenia community here? 😊

Don't hesitate to share your story, your questions, concerns, or anything else about life with myasthenia gravis! @buddy1223@Hannahlaidi@markcas2001@Disemaryk@Olivia45@theowilson@SNA_10@camuk1@Lilly @RobVen@AlmostFrench@Sarah999@Eve134@chezza2409@Heathergem@Geraldine4459@Darukswoman @silson@Lindybee

Take care,

Courtney

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Courtney_J, Community Manager, Carenity UK

MaggieMG

Edited on 18/11/2022 at 16:13

MaggieMG

Last activity on 23/03/2022 at 10:02

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Courtney_J

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27/06/2022 at 00:24

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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@MaggieMG I can imagine how difficult it must have been for you! How much time passed between the onset of your symptoms and the diagnosis?

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Courtney_J, Community Manager, Carenity UK

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lilyofthevalley

17/05/2022 at 23:49

lilyofthevalley

Last activity on 03/07/2022 at 13:34

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Hi, my name is Lily, I'm new to this forum, and new to the disease, actually. I came here in search of advice and encouragement. I've been recetly diagnosed with myaasthenia, and I still can't get used to the idea, it scares me. I've never heard of the disease before! And now I have to learn to deal with it on a daily basis.. I find it hard to get used to the fact that I am ill. How did you manage to accept the fact and just move on?

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Courtney_J

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25/06/2022 at 23:30

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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@lilyofthevalley Hi, welcome to the forum! I can imagine how hard it was for you to learn about your diagnosis. I hope you will find support here, from other patients and/or carers.

Good luck!

@Louiseogb @Zaphod001 @scotsgal57 @Alanb50 @Alison @Ellielay @Mg-mom @Medsassi @kerryab1 @NicoleS @Trishna @michelle.oliver @RebeccaCopson @Aurelie

Do not hesitate to share your stories in the comments below!

Thank you!

Take care,

Courtney

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NicoleS

26/06/2022 at 07:20

NicoleS

Last activity on 06/08/2024 at 09:38

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@lilyofthevalley Hi Lily. Welcome to the forum and I'm sorry that you are going through this. I was also very recently diagnosed with myasthenia and had never heard of it before. I was terrified and didn't know how I would manage it all. But I'm now learning to be really kind to myself. Having myasthenia means we have to adapt to this new lifestyle and reality and it takes time to figure out what works for you and what this all means. I would say just take it one day at time. There will be good days and there will be bad days, really take time to enjoy the good days. And when you have bad days, it's okay too. Rest and be kind to yourself.

Courtney_J

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27/06/2022 at 00:20

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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@NicoleS hi, thank you so much for sharing!

Is there anything in particular that helps you stay positive and better cope with the consequences of the disease?

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Courtney_J, Community Manager, Carenity UK

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Valichari

27/10/2022 at 21:44

Valichari

Last activity on 29/04/2023 at 11:12

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Hi, my husband was diagnosed with Myasthenia Gravis 4 years. Diagnosis was fast he had ptosis(droopy eye) went to the doctor and he was sent to the eye casualty. By evening that day he was diagnosed.
I have lupus(SLE)and many other conditions I developed double vision 2 years ago, with covid and us shielding nothing much was done to sort me out. I have also had swallowing/choking problems.I have lots of other problems but with so many conditions it’s hard to know which is which , I also have macular degeneration and had to go to optician as I had sudden deterioration in my sight. She sent me urgently to see two opthalmic doctors. I saw an optometrist who said “it’s leaning towards myasthenia gravis. It may not be but I don’t know what else it could be.

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Val

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