June Means Myasthenia Gravis Awareness Month!

                                                         

When most people think of the month of June, they think of summer picnics, weddings, days at the beach, yummy summer produce, and more.

When I think of June, I think of Myasthenia Gravis Awareness, because I have Myasthenia Gravis (MG), a neuromuscular disease that has occupied more of my life in the last 27 years than anything or anyone else.

Before I was diagnosed, I went to many doctors.  I heard it all:  I was just lazy, I was fat and needed to lose weight and all my problems would go away, all of my symptoms were in my head, I had an anxiety disorder, I just wanted sympathy.  You name it, I heard it.  It was devastating.  Knowing there is something seriously wrong with you and no one listening is the most terrifying thing I have ever experienced.

Finally, I *begged* another doctor in the practice I was patronizing to see me. (It was their policy to not switch patients from one doctor to another, even when one doctor is willing to let you die!) This new doctor saved. my. life.  He took one look at me and said, "You are very, very sick." I think I cried with relief.

He ordered every blood test known to man, and the trips to the "ologists" began.  Pulmonologist, including sleep study; cardiologist, including echocardiogram; neurologist, including lumbar punctures, CT's, MRI, MORE bloodwork; psychologist (actually psychiatrist, but that's not technically an "ologist"... going for continuity here, people!) etc.  The first neurologist I saw told me I had a tumor on my spine without doing any concrete diagnostic tests.  Needless to say I never saw him again.

On October 13, 2000, 5 *years* after my first symptom, I had an MRI under sedation.  I quit breathing, turned cyanotic (blue from lack of oxygen) and they had to call a code, do an emergency intubation, and bag me through the rest of the procedure.  So much for symptoms being psychological; even the *best* actors (or nut jobs) couldn't fake not breathing when unconscious.

Four days later I was flown via helicopter to the University of Michigan, intubated, and dying.     

Now, the best thing about the University of Michigan hospital is that they are a teaching hospital.  That means you get the opinions and minds of MANY doctors and medical students pitching in on your case.

The WORST thing about the U of M hospital is that they are a teaching hospital.  That means they switch doctors every calendar month.  When I first got to the hospital, I had *rock star* doctors (or so I'm told... I was heavily sedated for my own safety, and probably the safety of the medical staff around me!). I received 2 rounds of plasmapheresis, so a total of 10 treatments in October.

November hit, and I got new docs.  And they sucked.  They were lazy, narrow-minded, uneducated people who didn't give a rat's ass about their patients, and gave even less thought to solving the patient's problem.  Dr. Andrea Bozoki and Dr. Ming Hong...These are two names you should remember if you ever need a neurologist.  Run far away.  Why? Because they almost killed me.

They stopped doing the pheresis treatments which were definitely helping me and giving me strength back.  They decided I didn't really need it.  They came up with this crackpot diagnosis of "chronic axonal motor neuropathy."  So let's break that down....

Chronic:  Always
Axonal:  adjective form of axon, meaning nerve fiber
Motor: movement
Neuropathy: refers to general diseases or malfunctions of the nerves.

So their diagnoses was something like I always had nerve fibers that malfunctioned when I moved.

{{crickets}}

Dr. Bozoki told my family if I lost 50 pounds I would be fine.  FINE. Not fine! (I've lost 70 since then, and it didn't make one lick of difference as far as having MG!)

Dr. Hong told me (while I'm in the hospital, on a vent, trached to get rid of my double MRSA pneumonia) that if I would just accept the fact that all of this was in my head I would get better.

I looked at him, grabbed my notepad and wrote, "You mean I'm CRAZY?"  And he just kind of closed his eyes and nodded his head.   Yes, these were the doctors in charge of my health, my very LIFE...and they thought I was an overweight nutjob.  Instills lots of confidence...

I was discharged just before Thanksgiving with pain pills and quite a high dose of anxiety medication.  Nine days later, (praise God it was December and I'd hopefully not get any WORSE docs than I had in November) I was driven back to the U of M ER when the pills I was trying to swallow were coming back out of my trach.  By the time I got to the hospital, I had almost no muscle control.  By the time I got to a room, at 2 A.M. (after sitting in the ER for 10 hours), my entire face was paralyzed.  I couldn't close my mouth all the way, and I couldn't open it.  I couldn't open one eye and I couldn't close the other.  I couldn't hold my head up.

And I was terrified.  

To be continued....