Sunday, June 22, 2014

June Is Myasthenia Gravis Awareness Month



Myasthenia gravis (MG) is a chronic, autoimmune, often invisible neuromuscular disease that has a not-quite-understood origin and no cure. It is Latin for "grave muscle weakness" and affects 20/100,000 people in the U.S. The article MG in the Simplest of Terms says: "'Autoimmune' means the body is attacking itself. The most basic way to explain this is to say that MG causes our bodies to make antibodies that work against our own nerves and muscles".

MG has the distinction of being the first chronic illness I was diagnosed with. I was diagnosed almost 25 years ago - when I was 12, starting jr. high, and starting my period. That was fun times. My community already had one suspicious eye on me before the droopy eyelids, other sagging facial features, ragdoll presentation, and random falls in the hallways at school solidified that I MUST be on "dope".

Fortunately, my mom and pediatrician did not believe I was on "dope" and I was sent to a specialist in another town (mine didn't have any neurologists at the time). My first neurologist was good at diagnosing and medication dosages, but had a terrible bedside manner and made me feel really badly about myself. It was as if the MG was somehow my fault and I wasn't proceeding with the foreign concept correctly or quickly enough for him. ("That's why they call it WORK! Because it's damn HARD!) This is laughable because I was, in fact, working hard AND people with MG tend to move pretty slowly. I was relieved when a new doc from out of state moved to my town and was competent all around (and had the most stylin' cowboy boots I'd ever seen).

There are two types of MG: ocular (affecting the eyes only), and generalized (the type I have), which affects all the voluntary muscles of the body ( skeletal muscles, lungs, etc.). 

Symptoms include: a drooping eyelid, blurred/double vision, slurred speech, difficulty chewing and swallowing, weakness in the arms and legs, chronic muscle fatigue, difficulty breathing. These symptoms can fluctuate wildly from hour to hour and day to day, which is one reason why a person might be using a wheelchair one day and not the next.

One of my favorite ways to explain the general muscle weakness: It's like walking through thigh-high quicksand while also trying to swim through it.

Here is another beautiful analogy:


My symptoms started out in a pretty awful place, but thanks to a thymectomy and regular doses of Mestinon (pyridostigmine) and occasional prednisone, have been relatively stable for several years. I still have flares, but they aren't nearly what they used to be. The jury is out on how much my chronic use of this medication has contributed to my other health problems, but there's no real way to know. What I do know is that the benefits of these medications (there could have been so many more) have improved my life to a huge degree.

So! Why do we need awareness? Because I want people (including medical personnel) to be able to pronounce "myasthenia gravis" and "pyridostigmine" and have a basic idea of what they are. Because explaining why I can't do something today that I could do yesterday or this morning takes more energy than I often have to spare. Because this:

Handicapped Parking "Police" Rage from http://womenwithmg.org/


6 comments:

  1. Sharing! Also, we should have a 'hot chicks with canes' luncheon ;)

    ReplyDelete
  2. I clearly need to hit the gym and get a pimp cane. the flip top will hold my valium, and the cane will hold me up when i'm too depressed to stand. i'll bring tomato, basil and avocado sandwiches and fresh juice.

    ReplyDelete
  3. i hope i won't need a cane for walking any too soon. my hyper mobile joints have given me mild, yet painful arthritis in my knees and I'm afraid I may be developing arthritis in my ankles as well :(

    ReplyDelete
    Replies
    1. My joints are plotting something as well. I can tell you where to get "fun" canes if you end up needing one! <3

      Delete