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7 Years Later, A Second Opinion Uncovers a Misdiagnosis

Guest Post by Nancy:

I never gave up hope for a cure for my medical diagnosis of Parkinson’s disease.

That dreaded day stands out clearly in my mind as April 28, 2001.  What alerted my husband and me that something was wrong was a noticeable, consistent shake in my right hand.

My family physician cautiously informed us that this tremor could be possibly Multiple Sclerosis or Parkinson’s disease.  He referred me to a local neurologist who performed a Nerve Conduction Test.  From the results of this test, the neurologist confirmed that I possibly had Parkinson’s disease.  He suggested that I travel to Strong Memorial Hospital in Rochester, New York to meet a Parkinson’s specialist.  It was after this consultation that my worst fears became a reality.  I definitely had Parkinson’s.

I was confused.  I was a 45 year old mother of 2 children and all of a sudden diagnosed with an incurable, neurological movement disorder.  How could this happen with the lifestyle I lead?  Here I am an athletic, always on the go type person.  I was the mother who did everything for my family.  I was the teacher who did everything for my students.  I WAS full of life.

Not being the type of person to dwell on bad situations, I figured that there had to be a reason for me being “the chosen one”.  I decided that I must learn how to handle what God had placed before me.

During the first year of this diagnosis, the only visible symptom was a tremor in my right hand.  I knew that I could deal with this. Shortly after though, I started experiencing severe migraine headaches.  These headaches were so unbearable that at times I could not get out of bed.  Over the counter and prescription medicines would do little to get rid of these headaches.  As a last resort, I would go to my doctor’s office for a Demerol shot.  As drastic as this would seem, it usually put me back on my feet in 12 hours.

At about the same time that I experienced migraine headaches–syncope (passing out) episodes began.  There would be no warning signs whatsoever with these fainting spells.  I would be physically and mentally okay and then all of a sudden I would collapse to the ground.  This condition created some bad situations.  For instance, I twice fell down stairs in our 2-story home.  Both times I broke my left arm, which required surgery.  For safety reasons, we finally made a decision to sell our much loved home and purchase a ranch style house.

Syncope episodes were not only confined to the home, but also occurred in public.  From 2001- 2006 I had 15 unexplained fainting spells.  Usually, I ended up going to the Emergency Room because I was unconscious and remained that way for at least 10-20 minutes.

Another dreaded fear also became a reality.  I was worried that I was going to have a syncope episode while I was teaching my 6th grade students.  Up until 2005, this had not occurred.  Unfortunately, in 2005, my worst fear occurred.  I was teaching my students and without warning, I passed out.  Upon hearing about this fainting spell afterwards, I was amazed by my students’ reactions to an emergency situation.  They were brave and mature.

I wish that I could say that this was the end of my collapse (literally), but it was not.  About 3 months later, it happened again.  I went down in front of my students.  Needless to say, my family doctor helped me to make a decision that this was the time to give up my MUCH LOVED career.  This was a difficult decision.  I retired from teaching due to health reasons on May 20, 2005.

These mysterious syncope episodes continued to occur for no known reason.  My doctors were baffled as to why these symptoms were occurring. A cardiologist became involved to see if the syncope episodes were heart related.  I had all of the known possible heart tests performed on me to try and determine a possible cause to this problem.  My cardiologist even implanted a Reveal device into my chest.  This was used to determine if I was possibly had a heart arrhythmias.  The Reveal device stayed implanted in my chest for the full duration of one and a half years.  This only proved that I have a strong heart.

Life got harder as the years went by.  Another major visual symptom started to show.  I developed a drag in my right leg and tremors in my right hand increased in speed.  My medications did not slow the tremor down.  I also was having a difficult time with my short term memory.  I was now on so many medicines that I spent a lot of time during the day sleeping.  My doctors warned me that one side effect of these medications in combination with each other would make me sleepy.  I understood though that I needed these medications to get through each day in a calm, normal manner.  I was caught in a Catch-22 situation.

In May of 2008, what most would have considered detrimental in their lives may have been a blessing in disguise.  I started experiencing seizures.  I was in the hospital for a week after the first seizure.  My local neurologist added another drug for controlling the seizures.  I was now up to 41 pills a day!  I again lost my driving privileges for my own safety and those around me. I was now afraid to even leave my house for fear that I would have a seizure in public.

I was then referred to a highly regarded neurologist in New York City.  I was admitted into Columbia University for an extensive two week stay.  After undergoing many tests, it was determined that after 7 years, I was misdiagnosed with Parkinson’s disease. The doctors informed me that I still have a movement disorder, but a treatable and, more importantly, a CURABLE disorder!  My whole life had just been turned around in a matter of two weeks.  One could only imagine the elation that I was experiencing with this incredible news!  It was almost too good to be true.  I feel like I have been given a second chance at life.  I am now down from 41 pills to 10 pills a day.  I feel like a million dollars!

My treatment plan presently involves physical therapy 4 times a week to decrease the atrophy that has developed on my right side.  I also have occupational therapy that includes handwriting skills in order to again acquire that beautiful teacher handwriting I once possessed.  My doctors predict that in a year’s time or so, I will be back to good health with no fear of “walking on eggs”!  My personal goal is to be able to roller blade again.

The most important lesson to be taught from this experience is GET A SECOND opinion! I never did.  Seven years of my life had been wasted by taking too many unnecessary and most likely, unneeded drugs!  It was concluded that the interaction of all of the pills most likely caused most of the bizarre symptoms that I was experiencing.

I lost out on many things during those 7 years, many of which I will never get back again.  Look out for yourself and be your own advocate!

There was one positive aspect that came about from having a seizure on May 22, 2008.  About 6 months prior to this event, my husband and I had read an Ann Lander’s article about programming your cell phone with ICE (In Case of Emergency) contacts.  So, I programmed into my cell phone ICE numbers.  At a luncheon for retired teachers, I collapsed and went into a seizure.  My friends tried to contact my husband to inform him of what had happened.  Unfortunately at that time, he had gone to the movies with my oldest son who had both shut off their phones.

Those same friends while using my cell phone noticed I had some ICE numbers.  They saw an ICE sister in my contact book.  My friends called this number and contacted my sister, who then met the ambulance and me at the Emergency Room at my local hospital.  Even though, I was unable to communicate an emergency phone number to my friends, they were aware to look into my contact list and see I use ICE.   Now, I use ICE stickers on the outside of my cell phone and wrap an ICE sticker around my medical alert bracelet as well.   I have realized through a firsthand experience how important ICE can be for someone who is in an emergency situation and is unable to communicate.

I spent 28 years as an elementary educator.  Now I educate all ages about the importance of ICE and getting second opinions. Those two aspects of being a smarter patient were lifesaving miracles in my life.

…………………………………………………….

Learn more about:

Learn More About ICE (In Case of Emergency)

Getting a Second Opinion

Being a Part of Your Own Healthcare Team

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