Wednesday, April 16, 2014

The Best of the Worst Possible Diagnoses

So for a little while, I've been having hand and foot/leg tremors. But when "the shakes" started getting worse and worse, I finally headed to the doctor. The waiting game was scarier than I had expected the last couple weeks. But I finally have answers and was given the best of the worst possible diagnoses, and I'm actually celebrating that. I'll have to deal with this my whole life, but it will be able to be managed. The story was longer than a reasonable Facebook status so I thought I'd just share the journey out here.


At first I thought maybe this started after the 80 miles I ran at Rocky Raccoon 100 a couple months ago. But I can think back to an instance of a leg tremor a year ago. And then the day before Rocky Raccoon 100 in early February, my friend Tony asked if I was nervous when my hand shook trying to take a race site picture. "No, it just does that sometimes."

After Rocky Raccoon 100, I was exhausted, and then a lot of things happened that all added to stress and lack of sleep. The one most notable item being producing the Fairview Half Marathon - that requires a lot of work and attention.

The hand and leg tremors would come and go, but they were getting to be bigger and more frequent. During the family's spring break vacation, I expressed to Steve some serious concern and wondered if I should get it checked out.

The next weekend I was in Portland for a race with friends and was able to show Lesley, Jeremy, and Sara what was happening when we went to dinner and my hand that held the fork shook very noticeably. They all agreed it was time to call a doctor.

Labs, Appointments, and Tests

My family doctor said we would first see if it was thyroid or B12 deficiency, both of which could cause tremors. 6 vials of blood and 24 hours later, nope. All that looked clear, so it was time to see a neurologist.

By the time I got to the neurologist, living with this apparent tremor had become really interesting. One morning, I struggled to put in one of my contacts because of the shaking. The neurologist took me through about 35 minutes of different neurological and motor skill tests. It was draining. Interestingly, after a long series of hand and finger movements and actions and tests, my left leg that was hanging off the exam table started trembling. Fatigue brings on the tremor quickly and forcefully.

In the end, the fact that my tremor was highly asymmetric (mostly my left side) concerned him. Time for a brain MRI. He was looking for the possibility of Parkinson's Disease, Multiple Sclerosis, or the option that I had an issue with my brain structure that was actually dampening the tremor on the right side and creating asymmetry. If that was all negative, I was left with what's called a benign essential tremor - the progressive shakes without other debilitating symptoms.

While the doctor wasn't an ultrarunner and thought running long distances was crazy with or without my symptoms, he gave me the go-ahead to run the Endurance Buzz Adventures Possum Kingdom 56K trail race the next day (April 12) and to keep planning for my next 100 mile race in May.

I did the brain MRI on Monday which was uncomfortable with my claustrophobia as I spent 30 minutes in a tiny tube with the loudest sounds ever blasting all around me, closing in on my tiny world. But the waiting game after was worse.

Imagine waiting for something but with the on and off again noticeable symptoms of the problem. Constant reminder. And every possibility except for the essential tremor was very scary. A rough couple days since the MRI!


The doctor's office called this afternoon, and my MRI scan didn't show the anomalies he was watching for so he has ruled my condition an essential tremor. As the doc explained it, an essential tremor is still an incurable progressive neurological disease. Not much is known about why the brain might send overcharged electric signals to some of the muscles. It is also not known how quickly it will progress or how far it will progress.

All they can do is manage the symptoms as it gets worse. When the symptoms are more than I want to deal with in my daily life, there are two kinds of medicine they use to try to manage the symptoms. One is blood pressure medicines, which the doctor expressed hesitancy with since I have a great low pulse as a runner and really awesomely perfect blood pressure. And personally, messing with the heart and blood flow is not something that sounds great. Then, the doctor said the other option was anti-seizure meds but he wasn't crazy about that plan either.

If it progresses at some point that medicine can't contain the symptoms, there are brain surgery options to try to dull or eliminate the symptoms.

Where Do I Go From Here?

So for now, I'll just deal. I had gone back on caffeine for a few weeks leading up to Fairview Half and since that can make it worse, I'm cutting that back out. I was also told to really work to manage my stress level and get sleep when I can. While awaiting the diagnosis, Steve, Jeremy, and I were all proceeding with making plans for my next 100 mile race since I was given the okay by the neurologist. The tremors might be worse late in the race with the combo of cold, adrenaline, caffeine, fatigue, and lack of sleep, but there's nothing to indicate it's unhealthy or unsafe, just that it may be a bigger annoyance or very uncomfortable.

In the meantime, don't ask me to pour drinks, carry your very full beverage glass, or ask me to take our group selfie (at least if you don't want it to be blurry). And the rest we'll figure out as we go!

After the scary possibilities and grieving my circumstances off and on the last couple weeks, I'm in a good attitude about this diagnosis and glad I did a good job of not putting my life on hold.


  1. Wow! You're one tough cookie. I love your positive attitude <3

  2. You have an amazing attitude and some guts, as well as a good sense of humor - those should all serve you in good stead. I'm sorry you have to deal with this, even if it's the best of the possibilities. Hoping the episodes are few and far between, manageable for many years.

  3. You are amazing! I am proud to call you my friend.

  4. NO Coffee??? I'd get a second opinion!
    Best of luck with it - I'll be glad to fill your water bottles to the top at the water stops!

  5. once again you've proven you're stronger than most. Good luck with the journey ahead Libby

  6. Sending prayers your way., God is the miracle worker. Praying for healing and grace to accept what ever comes your way.

  7. Libby. You are a inspiration to us all. Long may you run!