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June is Myasthenia Gravis (MG) awareness month. MG is the autoimmune neuromuscular disorder that now impacts nearly every aspect of my life.

Summed up in the simplest of terms, your body basically turns on your nerves and muscles.  Obviously, it’s far more complex. But that description gives the average person a pretty good idea of what is happening. The more you move a muscle, the more your immune system attacks that area, which is one reason why rest is so very crucial to those with MG.

MG symptoms include: drooping eyelids, vision problems, difficulty speaking, problems chewing and swallowing, weakness in the arms and legs, muscle fatigue and atrophy, difficulty breathing, and many more.

The symptoms of MG are similar to many other health problems. Therefore people with MG are often misdiagnosed, or suffer for a long time before getting an accurate diagnosis.

The severity of MG can vary widely from person to person. Even within the same individual, it can vary widely from day to day, or even minute to minute.

Some of the things that help separate the symptoms of MG from other similar disorders are symptoms that increase with activity and decrease with rest. Heat makes MG worse. People with MG have to be very careful not to get overheated. There are also a large number of medications that are contraindicated for those with MG. Some individuals seem more sensitive to medication complications than others. Some individuals respond better to the limited treatment options, than others.

Keep in mind what my sidebar says: I am not a doctor and nothing I say should be taken as medical advice.

Based on my personal experience, it is my personal opinion that anyone who has been diagnosed with fibromyalgia who has intermittent visual symptoms and/or vocal or swallowing difficulties, should consider seeing a neurologist who is familiar with MG and can properly evaluate them to see if they have Myasthenia Gravis.

It’s very important that people have at least a general understanding of what MG is, not only because they may experience it someday, but because they may encounter someone in the middle of an MG crisis someday who is unable to vocalize what is happening to them.

People going through a crisis can collapse at home or in public, and are often incorrectly assumed to be intoxicated – even by paramedics.  The more people that know about this disease, the less likely someone is to die while someone misunderstands what is happening to them. While most of us do get warning signs that our condition is heading downhill, it is also entirely possible to be able to function near-normal one minute, and literally collapse the next.

That is why we need awareness.

I’m going to post a couple of links to some sites that tell more about MG, here and here and here.

But I do it with this disclaimer: Some “MGers” are not pleased with the tone of many things that you read on the internet about this disease. Some sites present MG as a serious disorder, but one that you can simply pop a pill for and it all goes under control again. While this may be the case for some, it is not the case for many.

For many the treatment is ineffective, the side effects intolerable, or both. Our personal experiences don’t really align with much of what we (and our friends and family members) see on the internet.

I hope (God willing) to do a series of posts throughout June on the topic of Myasthenia Gravis.  The past two weeks have been particularly rough for me. I’m having some problems with my medication. Yesterday I spent more time in bed than out. Thankfully one of the beautiful things about running my own blog is that I don’t have to make any promises on how often I will post. But I do want to do my small part to help raise awareness about this disorder. Also some new friends of mine from a support group, may contribute some posts as well and I am really looking forward to seeing what they send me to possibly share with you here.

To my regular readers, I know I haven’t been the most forthcoming person about my medical issues in the past, because I don’t enjoy talking about them. But I want to thank you for being part of my support system, whether you knew it or not.  

To my new friends who are visiting from the MG support group, if you want to get updates on new posts you can subscribe via email (using the subscription field in the sidebar on the top right of this page),  and/or you can add me on Facebook (where I try to remember to announce new posts).  

MG is not fun. But there are worse things in this world, and I am a firm believer in trying my best to remain positive and hopeful. It is my hope that I (with the help of others) can do our small part to shed a little light on this disorder during the month of June.

Thank you for reading!