Wednesday, June 22, 2011

How I Met The Monster.....Episode Four

A year ago this week my life would change forever

The hospital adventure;  Well as I mentioned previously, I went to the hospital by ambulance. And yes the neighbor's were all on their porches to watch my departure!!  After all, who doesn't like to watch a neighbor on a stretcher.  

Our town is rather small, it's "One Square Mile of Happiness", well that's the motto anyway!  We have a volunteer Fire Department and First Aid Squad, they are a very dedicated group of people.  They are there for the whole community day or night.  There is never a charge for their services!  

My sister place a call to the First Aid Squad, filling them in on all the details.  She helped me to the living room, the doorway to my bedroom is very tricky to get in with a stretcher.  We didn't want anyone to get stuck!  Again we gave a rundown of the events of the last few days.  I'm so glad my sister was there through the whole thing, I don't think I had the strength to keep telling my saga.  For safety's sake I was strapped into a transport chair and brought down the front steps.  I was then helped onto the stretcher and placed into the ambulance.  The crew for my trip was a family of longtime members.  Mom, Dad, daughter, and her younger brother who is in training.  That's not unusual in Mayberry (our unofficial town nickname!).  We went to grammar school and high school with Mom & Dad, and their daughter was my brother's ex-girlfriend, like I said Mayberry!  It's funny, the first thing I did was apologize for not sending my 2010 donation in yet, they laughed and said they would give me a ride anyway!  

This time I went right into the ER, that's the beauty of coming by ambulance!  My doctor had already ordered labs, so they were done ASAP.  A history was taken by a nurse practitioner, one of the first things she asked was about a history of MS in my family.  To my knowledge there was none, but we have lots of other crazy things!  If you name a cancer there is probably someone in my family that's had it!  It was now time to wait for a room.  The place was pretty busy, but I only waited about an hour or so.  The time passed quickly, my body was still going crazy.  Weakness, muscle spasms, electric shocks, all taking their turns.  Then the sweats returned!  I hadn't had them in a few days , but they were back with a vengeance. All I could do at that point was keep ice cold cloths on my head and neck until my room was ready.

Shortly thereafter my doctor arrived, we talked about what was going on.  He was so reassuring.  The weakness was so bad at this point I couldn't care less what anyone needed to do to figure this whole mess out.  He schedules a repeat CT Scan, an MRI, and an EEG to go along with all the labs that had been done.  He had already contacted the neurology group that his office works with, and he reached out to an infectious disease specialist as a standby.  

Through all of this mess my vital signs were pretty good.  My blood pressure stayed pretty stable, it only rose when I was extremely weak.  Even my pulse oximeter stayed in the mid to high 90's!  I was placed on strict bed rest.  This included NO bathroom use!  I am so not a bedpan person, it's not pleasant for the patient or the nurse.  I had trouble sitting, turning, moving, and doing the simplest things for myself.  When it came time to eat the nurse's wanted to help me .  This nurse was NOT going to let anyone feed her!  I was so stubborn, I had them turn my tray side ways on the bedside table, I raised my head as high as the bed would allow and try to push the tray under my chin.  I was barely able to hold a spoon or remove the paper from my straw.  But I was going to do it my way!  

Some of the lab results were coming back, so far all was negative.  At this point a stroke was ruled out.  They also ruled out things like West Nile Virus and Lyme Disease.  The EEG was negative, no seizure activity.  The repeat CT Scan and MRI's were also negative.  There were no  tumors or lesions on the brain, so that kind of threw an MS diagnosis out the window.  The symptoms were wrong for Guillian Barre, that usually causes paralysis from the feet up, in some cases it causes paralysis of the breathing muscles requiring respiratory support.  My weakness was more generalized, mostly from my neck to my knees.  I myself had never even thought of Myasthenia Gravis, as far as I know it was that disease that made your eyelids droop.  As far as I could tell mine weren't droopy!  No one else mentioned MG yet either!  

With every negative test came joy, but also fear of what they might find.  We were having some problems at home, I even thought maybe I had lost my mind and was causing my own illness!  I couldn't hold back the tears, I was hysterical.  I was sure I was having a breakdown!  I expressed my fears to my doctor, he said to me that I wasn't crazy, he was sure there was something physically wrong, it was NOT in my head... Tomorrow, the stunning conclusion...
June is Myasthenia Gravis Awareness Month:
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  1. I feel like I have been down this crazy road of diagnosis but with a different ending. It is weird being in an ambulance also.

  2. I had to chuckle...I can just SEE you with your head practically on the bedside table tray trying to spoon food in your mouth. You know what's good about stubborn though? We'll live longer. : )

  3. Hi Rachel,

    It sounds so scary hun

    Rach xx


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