Signing up for Electrocution.

What you need to know is that ALS is a diagnosis made through exemption.  They test you for everything in hopes that something else will pop up, thereby saying you don't have ALS (Yeah!!!!).  As we started going through this we quickly realized that there are only a few diseases that I could have based on the symptoms I was presenting.  On the list was lymes disease, AIDS, and a few neurological diseases. I would tell you what they were but to be honest I forgot the names and quite frankly only people who have those issues actually know what the names are and what they do.

Let me say it is a crazy, mixed up world when you are praying for AIDS. Actually we were praying for Lymes disease, but since that came back negative we thought the next best thing would be AIDS.  Because really who wouldn't want that?

So the tests start.... First is lots of blood tests but they are boring so second is the MRI's.  I got to do a head and neck MRI as well as a thoracic MRI in hopes that they would find some irregularity with my nervous system that would tell them why I was having the symptoms I was having.  Many of you have probably been through an MRI, but if you haven't, the lovely hospital workers place you in a very tight tube and tell you not to move.  You have an IV that they use to put dye into you so they can see how blood flows throughout your body and probably other things that I don't know about.  I was lucky enough to get all my MRI's done at the same time which means double the time.  

I will let you in on a little secret.  The older I get the more I hate small enclosed spaces. And staying in them for prolonged times is not fun.  I had to close my eyes, attempt to relax in a tube that was barely big enough that it allowed me to barely raise my hand to scratch my nose (no I was not picking it).  Did I mention before that I don't like small spaces?  Gone are the days when I like liked spelunking.  Probably because I got a bit overweight (I never say obese) and when you get bigger you can't get into the tight spaces anymore and moving around also gets a bit harder.  Actually  what I really wanted was some versed (relaxing medicine) placed in my IV.  I mean why have an IV if they can't at least make you feel better about being in a tight enclosed space.  This did not happen and they kept me in the MRI for about 2 hours.  Fun times, let me tell you.

Well the MRI's came back normal  (Bummer!!!!) so it was on to the next test.  What they told me is that the Cadillac test for diagnosing ALS is called an EMG.  An EMG is a nerve conduction test that tests the speed and strength it takes for signals to go from one part of the body to another.

Basically, they electrocute you.  A lot!!!!!!!!

You may think I am exaggerating, but really they take a couple of pads which they place on your body and the they take a long needle, stick it into your body, then pulse your body with electricity to determine how long it takes your nerves to process the pulse of electricity from one spot to another.  All I knew was that  it caused the sensation of "PAIN".  They continued to probe and prod until at last they came to my tounge area, where they stuck me with a long needle under my chin into my tongue area and then buzzed me.  I was okay with the legs, arms, torso, back, and neck area (well not okay but I was trying to be manly in front of my wife)  but when they hit the tounge area my boddy came off the cart and there may be a hand print permenantly embedded into the rail on the cart  (at least I didn't scream like a little girl...I think).  (Note from Anne: there was a lot of moaning and grunting, not so much screaming.) I have had lots of different tests done in my life and this one by far was the worst one.   By this time I didn't care if I had ALS or not I just wanted the tests to be over.

After about an hour of electrocuting me they finally let me alone and told Anne and I that ALS was the most likely diagnosis as all the signs were pointing that way.

So after a month of testing and prodding they finally were able to definitively say that I have ALS.  I think I am making this sound much worse than it actually was.  But then again maybe I am not.  

I am not writing this to make you feel sorry for me because I am certain that there are lots of tests that are performed that quite frankly hurt a lot.  I haven't experienced those myself and coming from a nurse who worked in an OR, we at least thought it humane to give the patient anesthesia.  The reality is that we were grateful just to have an answer to what was happening.  I just wish they didn't have to course electricity through my body to get the answer.