Living With Myasthenia Gravis
Many people don’t know what it is like to live with Myasthenia Gravis because it is a rare disease. I’d like to shed some light into my life.
Since Myasthenia Gravis affects my muscles, I am often weak. Most often my symptoms begin with my eyes. Almost all of the time, my right eyelid droops. To people who don’t know me it may not be noticeable, but it is to me and my family and friends. It becomes noticeable if my symptoms worsen and there’s nothing that I can do about it. I then begin to feel like my forehead is drooping. You can’t see that, but it’s a pretty awful feeling. My speech can get slurred and I sound like I’m drunk. My head feels heavy, too heavy for my neck to hold it up.
If I get worse, my arms and legs then begin to feel very heavy. I often feel that I can’t move, especially walk. This doesn’t scare me any more, but it annoys me. I get very frustrated because I feel like I’m stuck in one place. I do have a scooter to use so if I feel strong enough, I can use it.
The worst symptoms for me is feeling like my throat is closing up. When I am extremely weak, this happens suddenly. This scares me a lot. It makes me feel like I’m choking. This will also happen for no reason in the middle of the night. I have to either get up myself or if I’m too weak, have my husband get some food (if I can swallow it) and my Mestinon. I also have trouble swallowing food sometimes and issues with breathing, especially when I move around a lot.
When I have a flare up, these symptoms are more constant, but on normal days, they do not happen very often. Being in the heat, getting stressed, being around chemical odors (even cleaning supplies) and just doing too much physically can set the symptoms off.
Life with Myasthenia Gravis, is not too bad because I know that most of the time my medication can control my symptoms. It may take some time for it to work, but it does work. If I need to have my medication dose changed, I can call my neurologist or go see him.
I haven’t been to the ER because of MG symptoms, also called a crisis, in years. I am grateful for what I am able to do and how my life is going right now.
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
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.
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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
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.
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.
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:)
my 5 month old baby was just diagnost with myasthenia gravis. and iam very very scare. i dont know if i can handle seen my baby suffer.
I was diagnosed with mg in 2006. I exprience all the symptoms that come along. Its not easy living with mg but a positive outlook has kept me going.
I am waiting on labs to confirm the diagnosis. Getting more concerned by the day. I have been struggling to breath for a month now. So worn out from trying to breath. The rest of my symtoms I have had my whole live, now age 42. Cronic fatigue. A week from Tuesday I will have an answer. Faith and family keep me lifted up.
5 days ago, I received cat scan results of a thymoma and to coordinate clinically with myasthenia gravis. I followed up with the ENT doc who asked me what I thought about the diagnosis. I responded, without a doubt, I believe I have this disease. I have gone through an array of emotions since then. First being the fright of open chest surgery. I have my surgical consultation in 2 days and am now focusing on the disease itself. I am trying to get an official diagnosis of MG prior to surgery as the thymectomy will knock me down for a while. I have an appt. next week with a rheumatologist and an appt. with my primary tomorrow to ask if I shouldn’t be seeing a neurologist instead. Anyway, I want to say thank you for each and every one of your comments. Each one has touched me. I know I am not alone. I am greatful to have been diagnosed as this has been going on for years. I just didn’t know why. I knew something was very wrong, but forced myself to keep on. My mind is strong, but my body has not been able to keep up. While I do not look forward to surgery, I am looking forward to feeling better and being able to enjoy my wonderful family and life more.