Myastenia Gravis: Something You Should Know About

wpid-fb_img_1433335296147.jpg                                                                                                                                                                                                                                                                                                                                               I went to Lutheran High West in Detroit, MI.  In 4 yrs, I made a lot of friends.  Ayana was one of those friends.  She was such a good friend; we kept in touch whenever possible.  Facebook helped a lot!  Our conversations are a melting pot of where we been, our kids, the people who love us, and the ones that missed out.  The usual catching up between old classmates.  One conversation I have always avoided was the subject of her ailment.  I don’t like to bring up troubling issues.  I always try to keep my friend’s mind off unpleasant things.  That changed one day.  She sent me a link to a movie that totally blew my mind!  I had to call her and ask “What the HELL?!”.  It was her way of  letting me know she was ready to talk about it.  Not only that.  She wants everybody to know.

The movie was about a young lady who came down with an unexpected disease.  No warnings, no sneezing, coughing, or fever.  Just the slow deterioration of muscle movement to the point where her family was sure she would not survive.  Hope was all but lost until a diagnosis turned everything around.  Tests revealed that her body produced high levels of anti-bodies that attack one’s muscle neurons.  Also tests were done to check “specific” muscle weakness through repetitive nerve stimulation.  She had a severe case of  Myastenia Gravis.   Myastenia Gravis is not contagious, nor is it hereditary but it is extremely random!  It mostly affects women under 40 yrs old and men over 60 yrs old.  However, it can occur at any age and race is a non-factor.  Muscle weakness is common in 90% of all illnesses and weak eyes or “Cock Eye” is not a sure-fire way to tell if some one has Myastenia Gravis.  This is one deceptive disease!  Most people go 2 yrs before they are diagnosed, eluding  patient and doctor alike!

It all started for Ayana in 1997 when all of a sudden, she could not look down.  An M.R.I. turned up nothing and her symptoms went away.  Relieved, Ayana went about her normal life appearing none the worse for wear.  One morning in 2000 changed all of that.  She awoke with one eye closed and the other crossed!  An M.R.I. wasn’t going to satisfy her this time and this was ten times more terrifying!  It seems that her ordeal in ’97 was only a small piece of a bigger picture.  Her condition kept  doctors guessing.  She went to 3 different doctors before she was finally diagnosed with Myastenia Gravis in 2001.  We call it MG.  The Doctor’s visits are often and unsettling.  I mean, how would you feel if  doctors call interns into the room like you were a medical oddity?  MG is a neuromuscular disorder which causes chronic weakness.  The name itself comes from a Greek translation meaning “Grave Weakness”.  The movie she sent me was one of the more extreme cases.  Ayana’s symptoms are considered normal.  Muscle fasciculations or “Twitches” are common.  Also she is often fatigued and subject to blackouts.  Ayana’s  eyes won’t move depending on the severity of  her flare-up.  Heat has become her enemy.  Having MG makes it difficult to enjoy a warm summer day.  A heat wave is unbearable for you and I but for her, it is crippling.  MG does not stop one from living a full life or holding down a job.  Ayana’s job allows her to work from home whenever symptoms become overwhelming.  These days understanding bosses are rare and Ayana’s have been nothing short of supportive.  Every bit helps.

Ayana shared her story with me to help her friends.  Friends she would probably never see face to face but share her disease.  She feels that raising awareness is the only way to ensure that more research is done.  The quality of life for those with this disease is depending on it.  Hopefully, one day something can be done to make diagnosis faster.  Or maybe a cure!  In the meantime, hopefully we are all a little wiser after reading this blog.  Myastenia Gravis is not a widely known disease but it should be.  Holla if you hear me!

-K. Greene

For More Info:

Myastenia Gravis Fact Sheet:  http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm#179993153

The Movie “Mute Mannequin”:  http://youtu.be/4EX2u8–YVg  (Copy and Paste the link into your browser)

Facebook Support Group:http://www.facebook.com/groups/6126913853?ap=1

15 thoughts on “Myastenia Gravis: Something You Should Know About

  1. Kelly, Has your friend tried tai chi as a system to help her regain stregnth? I sent your article to him and asked if tai chi chuan would help. He said it might, so if she is here, and willing to try, I will offer to show her what to do.

  2. It’s hard to explain to your family. All they know is that you’re sick…maybe not all the time…but there are times of Crisis. Mestinon keeps me from chewing up my bottom lip till it’s bloody. I’m nearly 70 & had my first symptoms at the age of 33. And, the beat goes on… One thing you should also know is that your Hemoglobin can be affected to the point you’ll need transfusions! Mine usually stays around 10. Sometimes drops to 8 or below; then it’s Transfusion time! Oh…I also suffer with Sjogren’s Syndrome and Thalassemia. MG and the other’s I mentioned are also Autoimmune diseases! THANKS “KELLY GREEN” for starting this Internet group for those suffering from MG. I just keep saying, “It’s all in God’s hands!”

    • Thank You for reading and sharing your story. I didn’t start a group but I wrote this post on my blog to help raise awareness. I hope the word gets out to help you, my friend Ayana, and all those with MG.

  3. Thanks for sharing your story. I also have mg. I had a thymectomy in march of 2012. I feel that saved my life. I am almost in remission. Even though two cat scans showed a normal thymus gland the pathology report showed a microscopic thymoma.

  4. Hi Kelly,

    You mentioned “Link” to a movie about MG. Can you Fwd tyuo me if you still have it? I’ve ben dealing w/MG for 36 years! I’m always looking for information!
    Thanks!

  5. Hi Kelly, I ran across your site and saw your section on Myasthenia Gravis. I worked at AAM as a Bricklayer until 2009. I also have M.G. been thru several crisis and been hospitalized for it. To those who have it, I know what you are going through. I also work with the Myasthenia Gravis Foundation doing charity work. If anyone needs info or help with their M.G. problems, all they need to do is call at 248-591-4419. We are located in Troy MI. 1000 John R-Suite111. They have counseling , support meeting and Doctors that specialize in MG. Enjoyed your blog. Rick Carra

    • Thank you Rick for reading! Please share this post as often as you can. Ayana and I are trying to bring awareness as best we can and I will post the information you shared on my Facebook and Twitter for all those who need it.

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