Neuropathy testing – EMG, NCS & a very frustrating experience with a doctor

I went to the neurologist today for an EMG (electromyography) and NCS (nerve conduction study).  The purpose of these procedures was to test for, and document, neuropathy (that I wrote about previously).

The nurse conducted the NCS first.  They stick various sensors on to you and zap you in places with electricity to measure how long it takes the electricity to travel down your nerves to the sensor they placed on you.

It hurts.

In reading about the test beforehand, people likened it to a static electricity shock that you get in the winter.  Ummm…not quite.  A lot worse.

One time when I was teaching chemistry, I was demonstrating to my students how to use a conductivity tester.  Like a dummy, I washed it off and tilted it in a way that the tester shocked me.  And this was not the 9-volt battery-operated kind, it was the plug-into-a-regular-electrical-outlet kind.  I jerked back, dropped the tester and broke the light bulb in it.  It hurt like crazy and I thought “man, that was dumb of me!”

That’s what this felt like.  Over and over, directly on my nerves to measure how fast it would travel.

Made me cry.  It sucked.

Then the doctor came in to do the EMG.  He introduced himself, talked about what he was going to do – explained why it’s not that bad.  He said the needles were very thin – like acupuncture – and that it’s much easier than drawing blood because it goes into the muscle and any part of the muscle will do.  You don’t have to “thread the needle” like you do with drawing blood – he said it’s more like hitting the side of a barn with a baseball.  He even made a point to explain how he had to do the procedure on himself before he could do it on patients and how he learned what made it hurt and how to make it not hurt.

OK…sounds alright so far.

Until he started.  OUCH!

The needle in the muscle is uncomfortable but definitely bearable.  But then he would ask me to move in various ways (flex my foot, tighten a specific muscle, etc.) to see how the muscles reacted to the signals to move or contract.  That’s when it really hurt.

The needle is in the muscle that was being moved…and when I moved the muscle the needle shifted around.  Holy heck that hurt!  Especially the needle on the top of my foot!

After he was done he had me sit up and proceeded to tell me that everything is fine.  All the results of both tests were normal.

So I asked him then why was all going on with me?

He began to explain that everyone, when they are immobile in the wrong position, has limbs that go to sleep.  He used the example of people holding their cell phones to their ear to talk and their hands going numb.  I explained that mine go numb all the time – mobile or not.  And I explained how they don’t work right – loss of fine motor skills, etc.

He explained AGAIN that when anyone is immobile in the wrong position they have limbs go to sleep.  And he explained again that this was good news – that I didn’t have any permanent damage to my nerves and therefore my Sjogren’s wasn’t getting worse.

First, wasn’t getting worse my butt…even in the last 3-4 months I’ve noticed a sharp decline in my health and ability to function.

Second – which part of “happens even when I’m mobile” did he not understand?  I understand that when you sit or hold a limb in the wrong position it falls asleep…everyone understands and experiences that, but this is DIFFERENT.

It’s constant, continual and doesn’t matter if I’m moving or not.  It’s happening while I’m typing this.  It happened when I drove to pick up my kids a while ago.  It happened when I was eating lunch right after that doctor’s appointment this afternoon.  And it happened hundreds of times today.

The look on his face when he declared me “perfectly fine” and when I asked him then why was this all going on with me was very clear to me.  He thought this was all in my head.  He explained it away to himself as a silly woman that didn’t realize that when you sit in a funny position for too long that your limbs go to sleep.  He clearly felt that this silly woman in front of him should be thrilled with his proclamation of “everything’s fine!” and jump with joy and go out the door on her merry way.

While I was eating lunch 15 minutes later (obviously not being immobile), I had to actively concentrate to be able to pick up the french fries between my first and second finger and my thumb.  I should not be having to actively concentrate to perform such a task!

When I drive I have to think about holding my hands around the wheel.

When I play or type on my phone I often hit the wrong part of the screen – and not like I used to with the occasional typo or not paying attention while doing it like I had for years, like everyone does – this is during moments of actively concentrating solely on that task and trying to hit a specific spot on the screen and I can’t do it.

All it would have taken for me to have had a very different experience today would have been for the doctor to say “I understand that you’re having these symptoms and that they’re very concerning for you.  The tests that we’ve done today don’t show the reason that you’re experiencing it.  The good news is that the disease hasn’t caused any permanent nerve damage, but unfortunately the bad news is that this information isn’t explaining why you’re experiencing these problems.  I suggest that you talk with your rheumatologist more to try to find out why you’re experiencing these things.”

I have no problem with his interpretation of the test results showing that as far as they can determine he can’t find out what’s causing this. That’s fine with me.  I’m not upset that these results didn’t show a clear cause.

I am, however, extremely upset with the glib attitude he had.  With the treatment that obviously the only explanation for what’s going on with me is that I sit immobile in the same spot too long.

And that when I try to explain to him that it is more than that, he simply repeats the exact same explanation to me again.

I know there is more than sitting immobile in an awkward position wrong with me.  I know that I am losing fine motor capabilities.  I know that I continually have to actively concentrate on tasks with my hands that should be completely automatic.  I know that I have to stop doing something to shake my hands in an attempt to “shake it out.”  I know that I have weakness and clumsiness that is not normal.  I know that after I was scrubbing the shower (obviously not immobile), when I went to the other room to add a cleaning supply to the shopping list, my hand wouldn’t work and I couldn’t write the words on the list.  I know that each time I sign my name on a credit card slip that it’s harder to do, takes more concentration, and looks less and less like “my signature.”

And I know that it is absolutely possible, and necessary, for doctors to show more compassion and empathy for their patients than that one did today with me.