Tuesday, March 13, 2012

My Story

In honor of MS awareness week. Here is My Story.

See what I did there? I've noticed on my MS message board that we love to find the letters "m" and "s" in words and then capitalize them. Like, MiSerable. MySterious. We're super clever like that. Onward...

In January 2006, we had our first clinical for physical therapy school and I did an acute rotation in a hospital.

3 things they do not tell you about being a PT in a hospital when you are in PT school.

1.  You are going to end up with poop on your clothes.
         For me, this was day one. Clothes, shoes, trail down the hallway. It was a great first day.

2.  Everyone hates you.
         You are the mean person making the sick old lady walk around the hallway. In a gown. Without her hair combed. You might as well throw her out the window while you're at it.

3.  You are going to walk 8-10 miles a day. 
          Acute care is exhausting if you do it well. You're moving furniture and people, walking all over the place, standing up all day. It's a lot of work. Plus, the poop and the hate compound the exhaustion.

That last one is really the important one. About halfway through my clinical I noticed that I was tripping. A lot. I ignored it and decided my leg was just tired from all this work I was suddenly doing.

A few months later, I noticed I could exercise less and less before the tripping started. 20 minutes on the elliptical, then 15, then 10, then 5, then walking across campus. One day, after an intense game of Wallyball (if you don't know what that is I don't want to know you) I couldn't move my foot at all.

Did you know there is an American Wallyball Association? You do now.

Here's where my stupidity really started. I didn't do much about it. It didn't seem like an emergency so I didn't go to the ER. I let a few instructors look at it. My orthotics teacher made an AFO for me so I could walk. I made an appointment with an orthopedic doctor because I've had 4 knee surgeries on that leg and previous nerve damage, so I figured it was related to that.

The ortho said it wasn't orthopedic and sent me to a neurologist. Fall of 2006 I saw my first neurologist and in three years, I saw 7 neurologists all over this country (North Carolina, Philadelphia, Cleveland, Virginia). I would say that 3 of them actually cared and tried to help me. Another 3 were quick to give up, and 1 told me I was insane. For real. He sent me a letter through the intra-hospital mail that was handed to me while I was treating patients telling me I needed a psychiatric eval. I still have dreams about cursing him out.

I had every test under the sun. Nerve Conduction, EMGs, needle EMGs, evoked potential testing, MRIs etc. Even a spinal tap. On New Year's Eve. I know how to party.

Nothing was showing anything conclusive.

Neuro symptoms started adding up. Loss of temperature sensation, muscle spasms, decreased field of vision, double vision, hand weakness, vibration/buzzing in the foot with neck movements, sensitivity to heat, change in reflexes, decreased balance, blah blah blah.

In 2008 I had an episode that paralyzed parts of my left leg. I still worked. I was so determined to convince people I was fine. Looking back, I do not understand how I physically did it.  I would walk with crutches to the hospital then pretend like I was just carrying them around for a patient to use when I got to the department (maybe I did need that psych eval). It took every ounce of my energy to work. Literally, all I did was sleep and work. Often at the same time. If a patient canceled, I would nap for 20 minutes in a treatment room.
I got bounced around between doctors, and made my way to Cleveland Clinic. I call it the Disney World of hospitals. They finally did some testing that mattered.


We moved back to Virginia and I found a great neurologist who helped me at least treat my symptoms. I still didn't have a diagnosis because it was not clear cut enough for insurance companies, but after my cognitive testing, I got a bill with the dreaded 340 ICD-9 code. If that seems like a foreign language - don't worry. Most patients wouldn't ever notice their code, let alone know exactly what diagnosis it was. I just happen to write that code down almost everyday when treating patients, so it was one of the few I have memorized. It just meant I had finally been given the diagnosis of MS

My last relapse was April 2010 and it has been a glorious 2 years in remission. I'm the strongest I've been in years. I owe some of that to luck, some to pregnancy, some to my family for allowing me to go at a slowed pace, and some to myself for learning what energy conservation means.

And that is My Story. A very very short version, believe it or not.


  1. So proud! Can you drink wine again? I'll gladly give you some for kicking me back into place! I know, enforcing destructive habits doesn't help a lifelong condition, this I know. But it sure makes it more fun (and livable)! :D

  2. Ha Mary, I definitely am drinking wine. I just finished a glass (shhh don't tell Zoe).

  3. Hi Ashley, I just found your blog after reading your comment on YHL. I've recently been diagnosed with MS too, and it's always good to 'meet' other people in the same boat. I'm pregnant at the moment and the much anticipated reprieve from MS hasn't come true. I'm 23 weeks and experiencing some really sucky symptoms at the moment. Still trying to keep a smile on my fave though :)

  4. Tamsyn, I'm so sorry for your recent diagnosis. What a bummer that you are not getting relief from your symptoms while pregnant. Hang in there and it is nice to "meet" you too.