You’ve Received a Myasthenia Gravis Diagnosis — Now What?

Megan Hunter avatar

by Megan Hunter |

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When you finally receive your diagnosis of myasthenia gravis, it will probably come as a huge relief. You have likely been sent from doctor to doctor as they try to discover what is going on with your body. You’ve had countless blood tests and scans, and retold your story many times.

You may have been accused of making up your symptoms for attention, or told that your issues are psychosomatic. You have been trying to push through the anxiety and weakness for some time. And you are probably very scared. I want to tell you that this is OK.

The National Organization for Rare Disorders has a detailed description of myasthenia gravis on its website. But even reading it 16 years after my diagnosis confuses me. Following my diagnosis, I received a simple explanation that is easy to understand and remember: “The message between your nerves and your muscles gets blocked.” That means that while you know that you need to swallow, speak, walk, etc., the message can’t make its way to stimulate the nerves to get the action done.

MG is an autoimmune condition. Think of your immune system as little soldiers who have been trained to fight any infection. They get taken over by a zombie apocalypse and now fight everything in their path — including the good guys.

Following are my tips for living with myasthenia gravis that I hope will help you:

1. Keep extra medication everywhere.

Keep it in your school bag, with the school nurse, in your work desk, car, and purse, and with your significant other. I guarantee that someday you will forget to pack your medicine — probably Mestinon (pyridostigmine). Ensure that you have a backup plan if this happens.

2. Do your own research.

When you have a rare condition, few doctors know about it or how to treat you. I found this resource at the Myasthenia Gravis Foundation of America website. I printed out the information leaflets and carry them in a folder everywhere I go. I have a copy in my car and another at the office, and I bring one to my doctor’s appointments and hospital admissions. These handouts have literally saved my life as they include information on which medications are contraindicated. I also have a seatbelt cover with my name, diagnosis, and medical aid details written on it. I carry an information card in my purse to hand to people if I am struggling (like in the “Joker” movie).

3. Plan your activities.

If you expect to have a busy Saturday, go to bed early during the week to save your energy. Sleep when you need to and ask for help. Don’t try to do everything yourself or you will end up going backward. And speaking from experience, that is not a good thing.

4. Join a support group.

Find people who understand what you are going through. They will become some of your closest allies, encouraging you, crying with you, celebrating your victories, and being there when you need to chat about your latest diagnosis, treatment plan, or life in general.

5. Feel your emotions.

For so long, I believed that I needed to act as if I were OK. I put on a happy face, but inside I was crumbling. I continually questioned why this had happened to me. Even now, I feel guilty about complaining about being sick. But I realize that the effort it takes to pretend is not worth it. And crying is OK.

6. Know that we are all different.

Some myasthenics battle only double vision while others are ventilated every time they get a cold. It’s not a competition — know that what others are going through might never be you. The disease’s wide range of symptoms makes us more difficult to treat. Don’t compare yourself to anyone else. Each of us is a snowflake and unique in our own way.

Take care of yourself. We are here to help and support you. You’ve got this!

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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Comments

Diagnosis and Treatment of Type 2 Diabetes avatar

Diagnosis and Treatment of Type 2 Diabetes

Nice post..good information ..keep update with your new ideas.

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Sheri Maloney avatar

Sheri Maloney

I enjoyed reading this newsletter. I have MG and I read everything I can about MG.

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Albert Barile avatar

Albert Barile

First of all, we all get something to battle. Stop crying: stop asking WHY ME! Boo hoo!
Go on the offensive.
Not once in awhile, but EVERY DAY.
Look at the overall picture of your life style and look to improve your weak areas.
I knew that MG was a red herring. It was a reason to view my lifestyle.
Twenty six months have gone by.
I quit drinking: I lost 52-pounds: and I exercise every day. Walk at least 5-6 miles every day plus the gym.
And I eat to stay healthy by cooking my meals. Seldom eating out.
But my advice is to look at the whole picture and counterattack. Honestly, it was hard for a long time. But consistency everyday is key.
Also, I am off my blood pressure medicines: heart is in the best shape in 10 years.
To conclude, MG was not a death sentence: it was a wake up call!
Anyone out here can contact me for support.
You can win this one!
Plus prayers!
Thank you.

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Rick Morgan avatar

Rick Morgan

Would like to receive newsletter

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Angie Padilla avatar

Angie Padilla

I too enjoy reading anything about myasthenia gravis, for so long I didn't feel right yet I didn't know why. I finally started waking up with one eye closed, anytime I turned the lights down to watch tv my eye would close and I couldn't figure out why. My arms hurt a lot, I would blame it on cold weather, but it was the fact my muscles got so weak that was it all along. Thank you for making sense of things for me. I get so real bad days but at least I understand more each time I read your news letter. Thank you, so much !!

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Mike avatar

Mike

I too was very active prior to falling mysteriously ill in 2013. It took five years and some of the top Neuros in Chicago to diagnose Seronegative Myasthenia in December of 2018.
I shared my diagnosis with those who missed it in the hopes my story will save someone else five years of being told "all the tests were negative", "your just tired", "it's all in your head (go see a shrink)". That last one is still difficult to digest.
Finding useful information for a rare illness is difficult and I'm glad forums such as this exist. While your doctor(s) may understand the clinical aspects of your illness, only those afflicted truly understand what you're going through.

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Deborah Orchard avatar

Deborah Orchard

My mother has just been diagnosed with myasthenia - she is aged 90. Her symptoms were double vision and inability to swallow food or water. She’s been in hospital for 2 weeks having been diagnosed firstly with reflux, then a stroke. When the MRI showed no signs of a stroke she was eventually seen by a neurologist who diagnosed it after 5 minutes!! My question is, do you think at her age she will make a recovery? She is on a saline drip and is being fed via a tube but is trying to eat puréed food too (which is difficult). Any thoughts i.e.will her double vision improve? Thanks in advance

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Debbie avatar

Debbie

I have had minor ptosis of one eye for over 5 years now. I have shown my opthamalogist at every visit and he said it was age-related and minor and I could have it fixed. I have seen many plastic surgeons and occular surgeons but I am too nervous since sometimes it doesn't appear too noticeable - its always there, in the same eye and its not really variable although it does look worse some days. only 1 person in all of these years has pointed it out. At one visit to a surgeon, he mentioned that before he does any surgery he tests for Myasthenia Gravis and that got me going. Not much info out there. took the blood test and that was normal. Read that it isn't conclusive in OMG. I do not have any other symptoms - no double vision or muscle weakness. But, I made the mistake of doing the ice test and there was improvement! I even went to a nuerologist who did not believe it was OMG. Its been so many years now, I am not sure if I should pursue this with a occular neurologist or if I should even try to get the ptosis surgery if it will just revert back and droop again.

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ANDRY CYPRUS avatar

ANDRY CYPRUS

hi there
good to hear from other people who have MG >
I am 48 years young...recently had a complete hysterectomy due to "suspicious cells" ...thankfully all ok
For the past 1-2 years have been having double vision and blurred vision
which i put down to working on the computer ...age related etc
After testing negative for both antibodies ...but single fibre nerve test positive
I must admit the diagnosis which for the time being is ocular myasthenia
really shocked me and scared me and still coming to terms with it. i have started taking mesition about 1 month
ago ( morning 60 grs , lunch 30 grs and evening 30 grs )
I have also gone to a naturopath who informed me that i have heavy metal poisoning coming from my root canals
so have a dentist appointment with a holistic dentist to try and figure this out.

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