Ella Update – They Found Something

Last updated on: October 3, 2014 at 2:52 pm by Rebecca Frech

Ella Update – They Found Something 2014-10-03T14:52:34-05:00 Rebecca Frech

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Wednesday afternoon, we went to see the new neurologist. (Sorry it took me until Friday to tell you. It took me a while to process it all, and there’s Ebola in Dallas!!!! That’s a lot for me.)

The new neuro repeated the Nerve Conduction Study and the EMG (muscle test) done by one of the previous docs back in July. Back then, the doctor looked at her results and said “There are three areas which are below normal and the rest are on the low end of normal. I’m going to call it borderline, and therefore normal.”

What we’ve learned since then is that this is a yes/no test. You’re either normal or you’re not. This makes me wonder what exactly “borderline” means. I won’t have to wonder for long, because I’ve requested copies of the test results.

Which brings me to this week’s test.

The nerve conduction study, which he ran first, tests the health of the nerves. The doctor places wires on her feet, then uses a thing which looks like a taser to shoot electricity down her nerves. It’s not the most pleasant thing ever, but it could be worse. At the end of the test, he declared her nerves to be healthy and normal. There’s no sign of damage or demyelination present. This is very good news.

Second up was the EMG, electromyography. This is the torture test for sure. It required sticking a 3 inch long needle into her muscles and then moving it around in there. (If it sounds like that would hurt, you’re right, and hurting is the point.) The doctor looks for two things with the EMG – the muscles telling the brain “Holy crap that hurts!!!!!” and the brain answering back “then don’t just stand there, MOVE!”

The muscles in her legs were wide awake every time that needle went into them. We could hear it in the white-noise static that registered on the computer. The more he moved the needle, the louder they “screamed” in pain.

They never moved.

It didn’t matter how much they hurt, or how much my girl cried, the muscles didn’t so much as twitch. There wasn’t the instinct driven flinch in the beginning or even an attempt to pull them away. The brain might have been roaring “MOVE!!!!!”, but the legs never heard it. For some unexplained reason, the message just isn’t getting through.

Which the doctor can’t explain. “I’ve never seen a patient with intact healthy nerves and muscles who doesn’t at least flinch in response to the EMG. I did everything I could to provoke them to move, and they didn’t.”

Even when he hit below her knee to activate her still intact reflexes, the leg kicked but the muscle firing wasn’t quite right. “The electrical pattern for the muscle was normal in shape, but it was so small and distant that I almost can’t measure it.”

As he rubbed the bridge of his nose and shook his head, he said, “If this was 60 years ago, when we didn’t have these tests, she’d be a slam dunk for polio. All of her present symptoms plus her viral pattern of fever and decline would perfectly fit into the polio diagnosis…except that she’s vaccinated against it, and polio has a signature. On the EMG, there’s an easily recognizable pattern for polio and all related diseases. It causes changes to the gross motor horn cells. The few times I could get her muscles to move, there wasn’t any change to those cells at all. The good news is that the muscles and nerves are healthy. If we could just figure out why the messages from the brain aren’t getting through, and could fix it, there’s no physical reason why she couldn’t walk again.”

So there we have it, in two and a half months her legs have gone from hearing the message to to not hearing it at all, but the legs are still healthy. This is a mix of the good and the bad, but I’ve decided to look towards the hopeful for today. If we can find the cause, and if it’s fixable, she could be healed. There’s still a lot of if between her and walking. This is good news, at least in part because it stops the conversion talk, but it’s just the beginning of where we need to be. She’s still a puzzle, but maybe we’ve found another piece towards putting it all together.

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