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Monday, August 20, 2012

You deserve it, you socialist !

So - - What I am trying to do is get this current so that I can just update this as we go.  I'm sure that I will be posting less often once I get this up-to-date.  Besides letting friends and family know what's up, I'm hoping that this account will help others who go through this diagnostic process. Of course, every case is different.  Now, where was I?

While Gerrí and I were waiting for our January 23rd appointment with Dr. Banks, I had my list of possibilities from the Internet, but we didn't discuss it much.  There was no point in speculating or dwelling on the possibilities, so we waited for that appointment.

We met with Dr. Banks who examined me.  Basically the exam consisted of looking at me - like staring at my face, testing my strength, checking my reflexes, having me touch the tip of my nose with my finger, making me walk a straight line, following my eyes, yada yada yada.  It all seemed very routine.  Then Dr. Banks said, "OK, we are going to draw your blood and run a panel of tests to identify or rule out any number of conditions."  Besides the blood tests, she wanted me to do a swallow test.  I asked her what she was looking for.  She listed several conditions, all but one of which were on my own list.  (I missed Myasthenia Gravis.) She then explained that what I was going through for the next little while was a process of elimination.  The blood panel could identify or eliminate almost everything on her list, except ALS.  So, if the tests were to come back negative, she would refer me to the University of Utah Clinical Neurosciences Center, where "all the ALS experts are."  None of this was a surprise to me, but it was weird hearing my list read back to me, and it was the first time Gerrí was faced with all of the possibilities.  So, they took my blood, sent it to the labs, and we waited.

One by one the test results came back negative, eliminating each item on our list.  So, Dr. Banks sent all of the test information up to the U of U along with a referral for me to visit with the Docs up there.  I didn't have an appointment and had no idea when I would get in to see the folks at the U.  But, I work just down the hill from the University Medical Center, so a few days after my test stuff was sent up there, I walked up to the Neurosciences building.  There, I met a very nice young woman named Kenya Arnett.  She is the scheduler for the doctors I needed to see.  At first, it appeared that I would be able to get an appointment pretty quickly, but then she noticed on my records that I needed to get an EMG test (Electromyagram) which consists of a nerve conduction test and a needle EMG test.  This was going to take longer to schedule - like another month or so.  I had a bit of a problem.  (By the way, everyone should have this problem.)  Gerrí and I were leaving for Maui on February 28th.  I told Kenya that it would be a lot easier to go on vacation if this were not hanging over my head.  She obviously understood and told me she would do what she could to get me in sooner.

True to her word, she called me within the next hour and had an appointment all set up for February 7th.  I was so grateful for her extra effort.  It felt like I was getting very close to an answer.

On February 7th, I met with two doctors.  Dr. French, who was on a fellowship at the U, and Dr. Gordon Smith, the attending physician.  Dr. French examined me, doing many of the same things that Dr. Banks had done, plus some other stuff.  He left the exam room, consulted with Dr. Smith, and both of them returned to the exam room.  Dr. Smith repeated much of the exam and then asked if I could spend the afternoon with them.  They wanted to do the  EMG test that same day.

The nerve conduction test is one where they put electrodes on your skin and zap you to measure how fast the nerve signals are traveling to and from the muscles.  That part of test appeared to be normal.

The needle EMG test is interesting.  They place little accupuncture sized needles into your muscle and hook the needles up to a computer that can measure the nerve impulses in your muscles.  Smart neurologists can tell the difference between normal and abnormal nerve impulses.  This is the first test that I aced.  I got an A for Abnormal.

If you are interested, and have no life, you can see what these tests are like here:  http://www.youtube.com/watch?v=k0uSpYd_Ics

After the test, the doctors stepped out to analyze the data and consult with one another.  Upon their return Dr. Smith had a rather odd question for me.  Dr. Smith said, "I don't mean to offend you, but I need to ask this question.  Have you ever had surgery on your breasts?"

Wow - that certainly came out of left field!  But, quite amazingly my answer was, "yes." 

Dr. Smith said they were going to return with a diagnosis of a motor neuron disease, in this case ALS, but they had just enough information from their tests to prompt the question.  It seems that there is a disease that mimics ALS called Kennedy's Disease.  Kennedy's is a hereditary disease.  It is similar to ALS in many ways but it doesn't usually kill the patient, which is a definite plus.  One characteristic of that disease is gynecomastia - or breast tissue that develops in young men at puberty.  This is not an uncommon condition - in fact, if you've ever heard of a boy being teased about "rock tits" he probably had gynecomastia.  In my case, at three different times as an adult I developed small painful lumps on my chest, which were removed surgically.  So anyway, gynecomastia is not good news when you are a teen because idiot teenage boys like to give "titty twisters" to boys with this condition.  But now, in my case this was potentially very VERY good news.  The only way to determine whether or not one has Kennedy's is to do a genetic test.  So they drew some blood and sent it off to a lab.

Gerrí and I left the clinic that day with the understanding that I had a motor neuron disease, but with the very real hope that it would be Kennedy's disease.  I kind of liked the idea of Kennedy's for more than one reason.  I tend to lean to the left of center on many of today's political issues and I was looking forward to telling my very conservative neighbors that I had Kennedy's.  I was sure that they would say, "And you deserve it, too, you socialist!"



Hanging with the guys
back in the day.

5 comments:

  1. Just wanted to let you know, I'm a reader of your blog. Love you man.

    ReplyDelete
  2. hahaaha Brother Taylor your Funny! Even though you are ill, you have a good sense of humor, and that is an A+.

    I love your blog.

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  3. What a glorious socialist you are indeed! You will be blessed because you have courage to fight the good fight. The numbers of souls that you will inform, comfort, and encourage with your willingness to share this challenge in your life will be countless. May you and yours gain the best of each day.

    ReplyDelete
  4. Kevin!! You are amazing. Sending you blessings, prayers and love as always.

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  5. Hermano Taylor, we are here for you! You are in our prayers eveveryday. The Mejia family and the Garcia family are at your disposal!
    You are a great mentor and lider to Janet and I. We live you and Gerry very much.
    Animo!
    -franky.

    ReplyDelete

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