Living With Multiple System Atrophy

Something New Everyday

Two biggest problems in the last 3 months have been my eyes and pneumonia.  Starting about 4 months ago, I also started experiencing some pulling and drooping of facial muscles, which make my face look somewhat distorted.  Luckily it comes and goes, and like the eyes, is not yet permanent. 
The right eyelid often droops down and at times does not want to stay open at all.  The left does it somewhat also and three times now I could not hold my eyelids open at all.  I looked it up and there are a couple of fancy names for this symptom, but basically there is nothing to be done about but live with it. 

Fighting aspiration pneumonia is going to be an ongoing battle.  I spent a week in the hospital in July for pneumonia.  They did a modified barium swallowing test and the results were disappointing to say the least.  Thin liquids are going into the lungs as the “doorway” that is supposed to shut is not working correctly and not sealing off the pathway to the lungs, allowing liquids and any bacteria in those liquids to get into the lungs.  They also found that as I chewed food the base of my tongue was not rising up to block the throat until time to swallow.  This is allowing food to prematurely fall into the throat area and causing choking.  They put me on a “no thin liquids diet with finely chopped food to reduce choking.”  Of course they said this would not improve, only worsen, and to begin thinking about a feeding tube. 

The ophthalmologist said I had excessive square wave jerks of the eyes and also upward gaze palsy.  Also seeing slight double vision at times. 

A Brief History Of My Experience With MSA

  • First fainting of unknown cause was in 2002.
  • Several more episodes of falling blood pressure and fainting followed for the next 5 or 6 years.
  • Gradually noticed more and more stiffness, legs begin to have deep aching in thigh muscles.   This pain continues until today and is one the most painful aspects of the disease for me.
  • Shoulder and extreme neck pain started.  Neck pain was like a pulling on the back of the head, causing headache.
  • Visited many doctors and rhuematologist and was tested for all kinds of things including RA.
  • Stiffness and rigidity grew worse.  Hurt to get up and down. Joints ached. Difficult to rise from chair.
  • Begin to get lightheaded spells.  Would get dizzy, balance problems developed, minor tremors started.
  • End of 2009  Started dragging right leg.  Noticed right arm did not swing while walking.
  • Early 2010, diagnosed with Early Onset Parkinson Disease by Movement Disorder Specialist at SW University Medical Center. 
  • Urinary problems grew worse.  Urologist diagnosed neurogenic bladder. Prescribed catheters.   Urinary retention of 300 + ml everytime after urination. 
  • 2012  Cardiologist diagnosed postural hypotension. 
  • Expert in Parkinsons continued to say it was all unrelated. 
  • July 2012  Wound up in hospital with aspiration pneumonia and failed results in modified barium swallowing test. 
  • Staff neurologist diagnosed atypical Parkinsons, most likely MSA.  By then I had already figured it out by reading.
  • MSA confirmed by another neurologist. 
  • I continue taking Sinemet at a high dosage but it does little good, also on Neupro Patch, several muscle relaxers, Baclofen, Vitamins, stool softner, daily laxative, pain pills, and restricted diet.
  • Blood test show anemic, low Vit. D, low sodium, etc..
  • No medicine seems to have much effect.
  • Walking is very difficult with short, wide stance gait, use cane for stability.
  • Severe, completely disabling fatigue can hit at any time.
  • Very fragmented sleep, sleep as much in the day as I do night.  Usually wide awake several hours of the night. 
  • I have no plans on accepting any mechanical means to keep the system working, including a feeding tube.  I plan to live as I am and die when its time.