Comments on: Living With Myasthenia Gravis

By: Aaron Aliiloa Silva

Aaron Aliiloa Silva — Mon, 02 Aug 2010 05:11:38 +0000

I too have Myasthenia Gravis. I have had this illness since 1988. I had my thymus removed and I am currently taking Mestinon 60mg 3-4 times a day. In the beginning I had a lot of the same symptoms that you suffer from. In the 1990′s the illness went into remission for about 5 years. In 1996 it started to effect me again. But not as bad. I still feel it’s negative effects of weakness in my trunk muscles and arms & legs. It isn’t easy for those who are suffering worse than me. I am a walking miracle.Today I am able to cross country mountain bike up very step hills but I still have the effects from the illness and when I feel it coming on during a workout I stop and take breaks for periods at a time. And when I regain my strength I continue forward with my goal of health and fitness. I workout on a Total Gym 14000 three times a week and cross country mountain bike three times a week to stay in shape. I do this in Honor of all those who suffer from this unforgiving and at times debilitating illness. My hart goes out to all of you and I will be kicking MG where it counts. Aaron:)

By: Laser Eye Surgery Directory

Laser Eye Surgery Directory — Wed, 24 Mar 2010 13:32:51 +0000

In myasthenia gravis, certain muscles tire quickly, especially those of the face, lips, tongue, neck and throat. The usual victims are women below 40 or older than 70 but the disease may occur at any age.

By: Ro - Australia

Ro - Australia — Sun, 19 Jul 2009 10:53:42 +0000

I’m with you. I have just recently been diagnosed. My eyesight wasn’t great and I when all of a sudden in a matter of 2 weeks I lost pretty much half my vision, my optomertrist just said I will do you up a new pair of glasses. Needless to say that didn’t work. A trip to my doctor and his diagnosis was confirmed with blood tests 4 days later. I am one of the lucky ones. My breathing, while it gets extremely shallow & hard, has never stopped; while I have had food lodged in my throat from not being able to swallow, I couldn’t panic either. My body was constantly heavy and pulling me to the ground. Now, with medication, I am facing life again. Of course, being new to it all, we are still trying to get it right and my vision comes and goes letting me know when to fluctuate my dossage. This, along with my Epilepsy, makes my life a rather interesting combination (or cocktail if you are counting the pills). The thing is, it has made me slow down and realise how the world was flying past me and how much I was missing out on. With out MG in my life, I would have kept rushing on with work, ignoring emails, ‘forgetting’ to call people back because I was too busy. Life is too short. We all say it, but who truely means it.

By: Pat Curry

Pat Curry — Tue, 16 Jun 2009 11:09:34 +0000

Connie, knowing you and your amazing mental energy, it is sometimes hard to remember that you have limited physical strength. You make the most of every ounce of strength you do have to educate and entertain. I am proud to know you. Thanks for adding to my understanding of MG. Pat

By: JMom

JMom — Tue, 16 Jun 2009 00:07:10 +0000

You are a strong person to go through something like that and still have such a positive outlook on life. Thanks for sharing this part of your life. Take care. JMom’s last blog post..The Best is Yet to Be

By: Debbie Capps

Debbie Capps — Tue, 09 Jun 2009 03:57:07 +0000

Oh Connie I so know what it’s like to have a mom with Myosthenia. I grew up with often being reluctant to bring friends home to play because I always had to protect her from being looked at by strangers as if she were a drunk. Often duing a conversation she would begin to slur her speach and lose muscle control of her face and eyes

I have had to explain to strangers all of my life that “no my mother has never drank and no she is not drunk”. .She is only 14 years older than I am so we were sort of sisters more than mother and daughter.

It took years to find out that she not only had Myo. But also suffered from Narcolepsy. It’s hard to say which is worse. At least for her. Living with the weakness and the constant episodes were awful for my mom and all seven of her children.But on the bright side she has learned to deal with it wonderfully as you have.Being so protective of her we grew up a close nit group for the most part.

My mom is the strongest person I know and taught me how to laugh at my own plight. She laughs at herself about sleeping through our childhood and waking up with friends but we know how strong she is.

Those who don’t know anyone with Myo, Just know this. These are the most creative and wise people on earth. Adapting to function in our world while living in a slow motion world of their own is amazing. They have a special ability to empathize with others and an ability unlike anything I’ve ever known to make the very best out of every situation.. I am so honored to know you. You are a special breed of person…. Deb