My MS Story, So Far

Hello and greetings to all of you, my new friends. It is an honor to be the newest contributor and member of the MultipleSclerosis.net team! Since we will be getting to know each other rather intimately I thought I would start by introducing myself and catching you up on my story so far. Then I thought we could walk side by side as the next few chapters unfold, if you’ll have me of course.

I am a proud Alumni of Villanova University’s College of Nursing, and as long as you root for my basketball team in March we should get along just fine. After college I worked as a Neurosurgical ICU nurse at Georgetown University Hospital in Washington, D.C. After that I was a travel nurse for a brief but thrilling period of time. I love neurology, which is probably why when I began having obvious neurological symptoms I ignored them out of fear. During the summers I would get migraines, numbness in my legs, and hypersensitivity to even the slightest touch but these symptoms always went away on their own. I knew that I should be alarmed, but I really was not ready to know what the problem was. Instead I applied to and was accepted into a very competitive graduate program in Nurse Anesthesia, a program that only accepts 24 people a year. I rocked a 4.0 GPA my first two semesters, and took up Crossfit as a hobby. That was when my first big relapse hit. I lost feeling in both of my legs, and I really tried to convince myself it was just a sports injury…but deep down I knew it was serious. After I lost feeling in my right arm it was undeniable that I had a serious neurological problem, but I still resisted getting help. Finally, I was in the OR early one morning for clinical when my symptoms became so bad that my teacher had to come get me and help me downstairs to the emergency room. A series of MRIs revealed a dozen lesions in my spine and almost just as many in my brain. My spinal tap came back as “the most positive spinal tap” that a doctor at John’s Hopkins had ever seen- I’ve always been an overachiever! But I was encouraged when, after 7 days in the hospital and 5 days of IV steroids, I started to feel much better.

I started on Copaxone, lightened my course load, and stayed in my graduate program until the end of the semester. But with every doctor’s visit and every conversation I had with other people with MS I began to realize that I had a unique opportunity to make a difference. Deciding to leave the Anesthesia program was a difficult decision. It’s hard to walk away from something you worked hard to earn and have a talent for in order to go after something you may fail at, but I had a gut feeling that it was the right path. I changed to the Nurse Practitioner track and became a Multiple Sclerosis Certified Nurse without really knowing where it would take me.

Soon after becoming MS certified I started working as a nurse in the same MS Center where I am a patient. It is extremely rewarding work that I am so passionate about, and I have found that having MS has made me a better, and certainly more compassionate nurse.  I know what it is like to go through the tests, the uncertainty, and to finally arrive at a diagnosis of MS. I know what it’s like to be 25 years old, in the best shape of your life, and to feel like you are standing at the peak of a mountain with the world at your feet…and what it’s like to have a Neurologist knock you off that mountaintop in a 30 minute office visit. I have read the words “poor prognosis due to high lesion load”, felt the air leave my lungs, and realize that the mountain was never all that important. And finally, I know what it’s like to dig your heels in and start climbing that mountain again anyway.

So here I am, a few relapses later, now on Gilenya after trying Copaxone and Rebif, but overall doing great. Nice to meet you, friend.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (2)
  • Sonya
    5 years ago

    Welcome Stephanie!!
    What a pleasure to meet you! Sorry it has to be under these circumstances; no one wants to be a member of this “club”, but I’m so happy to have your input.
    Sounds as though you have the perfect outlook on things, which will carry you far in this battle.
    I was diagnosed 7 years ago, & have been on Avonex the whole time.
    I think it is an amazing thing you are doing, giving up your dream job, to work with those of us that have MS!! You don’t know how many times I have wished for someone, such as yourself, to be in my doctor’s office!! I know the doctors & nurses are trained experts in the field of neurology, but until you have walked a mile in my shoes, you really don’t understand!
    I look forward to your posts,& getting to know you, as we walk this journey together.
    Your new friend,:-)
    Sonya

  • Stephanie Buxhoeveden, RN, MSCN author
    5 years ago

    Thank you Sonya! As a nurse I always strive to be compassionate and as empathetic as possible, but you are right…there really is nothing like walking a mile in your patient’s shoes.

    All the best,
    Stephanie

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