The Lessons I’ve Learned Since My Myasthenia Gravis Diagnosis
Advice to Myself before Being Diagnosed with Myasthenia Gravis
Time has been my greatest teacher. She has taught me patience, resilience, and true commitment. She has taught me so many things I would love to share with my younger self.
If my myasthenia gravis diagnosis has taught me anything, it’s to appreciate movement. Go for every run I can. Take the stairs, not the elevator. Climb that mountain. Cherish my ability to move without requiring Mestinon (pyridostigmine bromide).
I used to be quite the field hockey player, and my life revolved around exercise. It was my outlet for stress, and ultimately became an integral part of how I managed my undiagnosed anxiety.
When myasthenia gravis robbed me of my ability to exercise, I lost more than a hobby. I lost access to my most effective mental health treatment. Since then, I have learned other ways to manage my anxiety but still firmly believe that movement should always be valued.
Good friends are another undervalued treasure. I shouldn’t waste my time with people who don’t appreciate me. Some people like me for who I am. When I fell ill, they were the ones holding my hand in the hospital. I don’t know why so many people waste their time on those who don’t see their value.
I have lost many friends since my diagnosis. One said I spoke about my illness too much. Another told me I was selfish for spending so much time in bed. Some people just respectfully faded away. But the people who have stuck around through all my medical messes are exceptional friends.
Myasthenia gravis has been very good at filtering people from my life. I am thankful for that. It has also highlighted the beauty in the ones I hold dear. The kindness and empathy displayed by the people who stuck around have left me awestruck at times.
An unexpected lesson I learned from living with MG is the value of following my heart. I have discovered the underrated happiness this can bring. This lesson has bestowed on me true romantic love, an occupation I enjoy and am passionate about, an Italian greyhound that has changed my life for the better, and a life I am proud to be living.
To my younger self: Myasthenia gravis is going to change your life. There will be moments when it’s for the worse, but if you choose to learn from MG, you can change your life for the better, too.
Never stop fighting. Life is beautiful.
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Comments
Rosemary Gault u
Has Ny one found a way to avoid or stop the muscle spasms and horrible nausea that comes with taking mestinon.
Retha De Wet
Speaking from personal experience, taking my Mestinon with food helps for nausea & taking a potassium supplement helped for the cramps. Some people do need to lower their dosage of Mestinon though, so best to check with your medical team!
Frieda Goovaerts
You are right all the way. I live in Belgium and have been diagnosed with LEMS when I was 76 years old. I was very social but going along with healthy people is now a problem. Some say they got the same as I but I understand they do not know what they are talking about. Constant fatigue keeps me at home but I cherish the fact that my ilness only hit me at an old age! Thanks for the beautiful years before. Keep writing your blog. Happy to read them and keep up the good spirit!
Retha De Wet
Thanks for reading and sharing, Frieda!
Kevin
I couldn't agree more. I have found that my best mg treatment is exercise. You have to know your limits but I have been able to push the threshold of exhaustion back. My lungs function better and my blood oxygen is higher. Right now I am learning to deal with high doses of Mestinon while the immunosuppressants are taking effect. Not fun, it is doable. I am doing a benefit bike ride tomorrow for Camp Make a Dream in Montana. It is 127 miles through one of the most beautiful areas on earth. It is good to be able to do it. Might not be fast but I will get there. All the best, Kevin
Retha De Wet
Wow, you are lucky you can still exercise! Keep fighting.
Sandra Petty
Hello Retha De Wet, I am a 69 year old female, I was diagnosed in 1994. I was devastated, and thought I was going to die. I did everything I could to research MG. I didn't have a computer so I had a hard time finding out what to do, my doctor in St. Louis Mo. was very vague about what I had. With all the years of fighting my weakness I have almost learned to live with my disease. I would like to befriend other MG er's.
Thank You for your column. Sandy P from Illinois
Retha De Wet
Thanks for reading and sharing your story, Sandy!
Margaret Clenney
Freida, I was also diagnosed at age 72 which was 5 years ago. I miss being active and doing things with my family. It takes such a little exertion now to make me stop whatever I am doing. Taking a shower wipes me out for an entire day. I need help to wash my hair because my arms are so weak.
I am however so thankful for the wonderful memories I have, especially for all the traveling I have done. I am thankful for family and friends who support me. I am especially thankful for a God who loves me and showers me with blessings. The best way I have found to cope with this MG and my other health issues is to recognize my blessings, be thankful for them, and in turn try to be a blessing to others.
Retha De Wet
Beautiful sentiment!
Shelby Maas
I've had MG for 26 years, I'm 65 now. I had to go on disability April 2019.
I, too, have lost friends or should I say acquaintances!
The number one thing I've learned is to accept help. At first I was, "I don't need help, I will figure this out". And I did you a degree. I also learned to meet people in that wanted to help, I realized I was robbing them of the joy of helping someone.
MG has been quite a ride. I'm still here and I'm still fighting.
Retha De Wet
I totally agree with this! I still struggle with asking for and accepting help, but it is crucial to managing life with MG!
Amy weiss
Very nice article. I was diagnosed three and a half years ago at 52. My issue is that family and friends don’t acknowledge my illness and act like I can do the same amount of activity as before. Even though I have a mild cases it still affects my ability to keep up in every day life. Even my own family rushes through their meal leaving me at the table still eating. It’s not like this is a disease you can tough it out . I do push myself for them but it sometimes is no fun.
Retha De Wet
I'm so sorry your family is struggling to understand your condition. You are absolutely right that there are just some things with MG that you just cannot "tough it out." I will keep you in my thoughts!
Akos- B
Hi Retha … very insightful and thanks to everyone for sharing
This is what I needed and I’m grateful I chanced on this article
I’m 45 year old female living in Ghana - recently ( 35 days ago ) been diagnosed with Generalized MG (
I hadn’t heard of MG till my diagnosis - symptoms started with ptosis which resolved by itself within 2 weeks. About 3 months after my ptosis incident woke up one morning to seeing everything double ( binocular diplopia)
Saw an ophthalmologist who referred to a neurologist
Currently being managed on Mestinon and predinisolone which has helped with the double vision, unfortunately still struggling with energy levels and the random muscle spasms
At the moment still trying to process all that’s happening and looking for information on how to manage life with MG
Thanks