(Samantha) SKH: When did you first start having symptoms for multiple sclerosis (MS)? What was it like?
Amanda (AJCRST): My first symptom was optic neuritis - my vision went from 20/20 in one eye to 20/60 in three days. This happened during the summer of 1998. Mom made me go to the eye doctor, and they sent me to the Eye Institute in Minneapolis. They told me that I might have MS, because optic neuritis is a common sympton of the disease. I was referred to a neurologist (Dr. Hiering), who told me to be on the lookout for further symptoms.
SKH: What symptoms did you have next?
AJCRST: Half of my body went numb that summer, 3 days before I was supposed to leave for France to study abroad for a semester. After about a million MRIs, a diagnosis was confirmed. During my bon voyage going away party, Dr. D (our family doctor) called personally to tell me I had multiple sclerosis. I actually ended up not going to France that semester, and went back to college in Moorhead two weeks after classes had begun.
SKH: That sucks. A lot. What kind of treatment did you start off with?
AJCRST: My first medicine was Avonex. I got a shot of this each week at the student health center. After getting the shot, I had flu-like symptoms every time. After six months, I would get fewer symptoms. I took Avonex for five years (1998-2003), and I eventually administered the shot to myself. In 2003, I had an MS relapse.
SKH: Tell me a little bit about your relapse.
AJCRST: My ab muscles hurt after I had been working out, and then they went numb. The numbness spread to the rest of body, and it was hard to walk and hard to go up and down stairs. It was hard to do even the everyday things, like laundry, as the machines in my building were down several flights of stairs. I remember thinking during this bad time that I was doing everything right (with the medication and eating well and taking care of my body) but MS simply doesn't care.
SKH: What happened after your relapse in 2003?
AJCRST: I started taking a new medicine called Beta Seron, which is a subcutaneous shot I give myself every other day. I've been taking it since 2003. During that year, I decided to tell the school district that I had MS. I also stopped directing drama programs at the end of the school year that year - the drain from the programs likely wasn't helping my health. The administration was supportive regarding my MS, but I also found that I received a lot of pity.
SKH: What would you say to someone with MS?
AJCRST: I would tell them that it is not a death sentence, you aren't going to die from it. I also think that is has made me appreciate life a whole lot more.
SKH: Are you involved in the MS movement?
AJCRST: I am not super active in the MS Society up in the Fargo/Moorhead area, but did participate (and encouraged others to participate!) in the 2008 MS Awareness Week this year. I've also attended the MS Women's Luncheon in the Cities, I donate money to the MS Society (supporting my sisters, best friend and dad down in the Twin Cities walk), and I am proud to say that one of my schools is walking in the Fargo walk this year! The staff at Ben Franklin Middle School are showing their Wildcat Pride by raising money for the MS Society and walking on April 19 (SKH: yes, this was today, and 49 people walked for the team!!!) I am the team captain for the Wildcat Walkers.
Interviewing Amanda was interesting for me...we would go from laughing about the silly things to being silent about some of the sobering realities of MS, all within a span of less than a minute. Overall, I think there is a message of determination, and ultimately of hope. As Amanda says, knowing what could happen with MS is very scary, but you absolutely have to live with MS every day, you can't wallow in it. Amanda's defiance against the disease is inspiring...she plans to go skydiving someday soon to prove her point:
"MS WILL NOT DEFEAT ME!!"