Wednesday, June 18, 2014

My Journey with MG, #MyastheniaGravis Awareness Month

It's hard to explain to it.
It's hard to understand it.

Living with an invisible disease. One day you are fine, the next you can barely function. 

You'll get talked about. Called lazy. Dramatic. Even drunk. People won't believe you. But it's real. And you're not alone.

Myasthenia Gravis is an autoimmune neuromuscular disease. It (most commonly) causes weakness in the voluntary muscle groups - including those used to breathe, see, and swallow.

I was diagnosed in January of 2013.

via Pinterest
I suppose I should have seen signs long before I began seeking medical help.

I had been having breathing troubles, but chalked it up to my seasonal asthma and allergies.

I had also been having trouble swallowing, but again, thought it was part of acid reflux that bothers me from time to time. Which really isn't the same, but I was being oblivious that something would be wrong with me.

Then my eyes. I started having blurred and double vision, with the occasional droopy eye- in my right eye. I went to an ophthalmologist and they gave me glasses. Mind you, I have always had better than perfect vision so this was a bit of a surprise.

The eyes got worse. They started drooping daily to the point I couldn't even drive so at the advice of my doctor (who I finally went to), started wearing an eye patch, as they began testing me for different things.

During the testing periods, my symptoms escalated. The exhaustion, fatigue, trouble swallowing, slurred speech. I was getting worn out just from a simple staircase. 

No one understood what was going on. I spent thousands of dollars and months in and out of the hospital and specialists offices, draining my HSA account, only to be told "we don't know" and passed off to someone else.

Meanwhile, friends and family were also at a loss. I would have an occasional good day, followed by two weeks of pure h-e-double hockey sticks. I was called lazy, a drama queen, told I was acting drunk. I felt so alone. The stress only made my symptoms worse. I was missing periods. My work was suffering. My life was a mess. I was only making it until 1pm in the day and would come home and just lie in bed - sometimes sleeping, sometimes just crying in my own self pity.

Thankfully, my boss' wife - who is a nurse- was sympathetic. They happened to go to church with a man who was diagnosed a few years back with Myasthenia Gravis. (What's that?) I had never heard of such a disease. She told him my story and he agreed, I needed tested for MG. 

I didn't want to believe that was the case. It sounded so serious and scary. To my shock and utter disbelief, at my next appointment, my doctor said to me "Have you ever heard of Myasthenia Gravis? I want to have you tested." My jaw dropped. I laughed and cried all at once, then explained to her the conversation I had just had days prior. 

After more waiting for appointments and getting to the right specialists who were familiar with the disease, I had additional blood testing and an EMG (electromyography), it was confirmed. I had Myasthenia Gravis. That was finally in January of 2013.

Since then, I've cut dairy and gluten from my diet completely. When I was first diagnosed, I was taking my medication 6x per day. Once I made the dietary changes, I felt better and have been able to cut it to closer to 3 pills per day now, instead. Amazing!

I also have started running again. It was always my love and passion, but when all my symptoms spiraled I stopped. Everything. And it's taken almost another year to really feel like I'm in a good place exercising again. I'm determined to not let this disease stop me.

That comes with a price though - Listening to my body. I struggled after diagnosis knowing when I needed to take a break, stop, rest, and recharge. I push myself too hard, too far, and then I pay for it for weeks afterwards.

I'm doing better now. Much better. More good days then bad, but I'm still learning. Learning when to stop, sleep more, and my limits.

I try to eat healthier. I've noticed, lately, I feel so better when I limit my animal protein to once daily (or none at all). I try to pump myself full of fruits, veggies, greens, and start my day with healthy grains - like a bowl of gluten free oats and fresh fruit. 

Also, I read read read as much as I can about autoimmune diseases and food. A great article to start with is this one: Foods People with Autoimmune Diseases Shouldn't Eat or learn more here at Eat to Beat MG.

I'm not perfect, so don't get me wrong - I'm also not a health care professional so this is just my story and what I'm doing.

My typical "smoothie of the day": Usually packed with fresh and frozen berries, mixed greens,
cucumber slices, lemon slices (no rind), banana, and water
So why am I sharing this? 
June is Myasthenia Gravis awareness month.

It's a reminder that you shouldn't judge. People around you can be fighting an invisible disease and you just don't know it.

It's a post to spread awareness to someone else who might be struggling, or know someone who is. Feel free to reach out to me for questions or support. 
It's also to say there is hope. There is life after being diagnosed. Some days will be good. Some will be bad... really bad. But don't lose hope.

I fight for this girl. She has taught me so much. I have to keep pushing for answers, for new hope, for my health because of her. She deserves nothing less from me!


  1. Keeley, thank you for sharing your story, so that others can have a glimpse into the world of having an invisible illness. I relate so much to this post and am on the same journey of trying to find the magic "Selena Diet" that will work best with my particular body chemistry. Good luck on your quest to find your magic "Keeley Diet"! ((gentle hugs)) I can't wait to see you in Las Vegas!

  2. Invisible disability is so hard to live with and so hard to share with others. Thank you for putting this out there and I hope your continued journey is not a difficult one. You are such a sweet person - even though you are wrestling with so much personally you still bring a lot of happiness to others Keeley! Thank you for being you!

  3. Its wonderful you are able to share your journey and how you've taken hold of your health! My dad has MG and explaining what it actually is it to people is really hard! Trying to get him to be proactive in his health is even harder. Thanks for sharing!

  4. I have been living with MG for 5 years now. I have the ocular type with very high antibody count that makes me have symptoms more like generalized MG. Your story sounds much like mine. People have judged me, called me lazy, and accused me of abusing drugs, etc. Nobody understands how hard it is to live with this illness. Especially since it is an "invisible" disease. Thank you touch for sharing your story. I will be receiving IVIG soon. I never thought about changing my diet. It is great advice. Will let you know my results in a few months!

  5. Thanks so much for sharing your story, Keeley. It will help so many! And as I said on FB, I'm so glad that living gf/df made such a difference for you. Hoping that you'll continue to improve, dear. Sharing your post ...


  6. Keeley, I don't have MG, but I do have a host of other autoimmune conditions and I can really relate to everything you said. It's hard when an illness is invisible because people can't relate to it {though I obviously wouldn't want a visible illness either!}. I often feel like if you were in a wheelchair people would treat you so differently, but because you're not people just perceive your behavior like you said as perhaps lazy, weak, irresponsible, irrational, attention-seeking, etc. And I can understand where they're coming from to an extent because had I not had the experience I now have I probably would have no idea how difficult it is to function with these invisible illnesses. I don't really expect anyone to ever be able to understand exactly what I'm experiencing, but I do feel like raising awareness can help so that people can at least have a clue and know that what you are experiencing is real and is difficult.

    I think the same goes for all judgments of others really -- for instance it's so easy to get frustrated at "a bad driver", but you have no idea what the person in that car is actually experiencing. Perhaps they are indeed a bad driver, but perhaps they are having a moment of intense pain, or perhaps they've been up all night because the outwardly invisible swelling throughout their whole body that is making it impossible for them to get any rest, or perhaps they were served some autoimmune-triggering food over lunch by accident and are now experiencing a loss of vision or "brain fog", etc. It's just one example, but it's a reflection I've been making in myself -- so easy to judge people and jump to conclusions without knowing the full story.

    Thanks for sharing!

  7. Keeley,I'm so glad I found your post. 2 days ago my eyelid started drooping. I was so scared. Fortunately I know a optometrist who lives in my building. He looked at it and suspected it was MG. He has referred me to a neurological opthomologist who I hope to see next week. My husband & I have just now committed to go gluten-free. I'll probably make some more changes in my diet. What medications have you been on? Any other advice? I guess we're all scared of the unknown. Thank you.

  8. Keeley,I was just diagnosed with MG. I'll be seeing a neurological opthomologist hopefully next week. My eyelid drooped and blurred my vision. I have a neighbor who is a optometrist who suspected it was MG. My husband &I have committed to go gluten-free. I'll probably change the things in my diet as well. I also have LS so I guess I'm prone to autoimmune diseases. What medications are you on? Any other warnings or advice for a scared 65 yr old woman? I recently moved to Chicago from RI to be near my grandchildren but I haven't established a medical network here yet. This is so scary. My oldest brother had MG for about 5 years before he died (from renal failure & diabetes, not MG). I saw him suffer. I don't think he was his own best advocate. I plan on taking this much more seriously than he did. Thanks for sharing.

  9. Keeley,I'm so glad I found your post. 2 days ago my eyelid started drooping. I was so scared. Fortunately I know a optometrist who lives in my building. He looked at it and suspected it was MG. He has referred me to a neurological opthomologist who I hope to see next week. My husband & I have just now committed to go gluten-free. I'll probably make some more changes in my diet. What medications have you been on? Any other advice? I guess we're all scared of the unknown. Thank you.


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