Unaware that she had MS, Robin spent more than a decade suffering through its symptoms before finally being diagnosed in 2012.
It has been a joke in my house that things always happen to me when I’m on vacation. In July 2000 I experienced light sensitivity. I don’t remember much that led to my diagnosis of “dry eye” but I do remember having a brain MRI and being thrilled when I was told I didn’t have a brain tumor. So, for 12 years I’ve used prescription drops for dry eyes and thought that I was the picture of health.
Over the years I’ve experienced ailments such as a pinched nerve in my neck from using the computer; I spent that summer in a sling and at physical therapy. During school vacation in April 2012, I was actually looking forward to spreading mulch. I emptied one bag on Sunday after crawling under bushes to remove leaves and branches -- and was exhausted. Plus my right leg felt funny; I thought I must’ve pulled a muscle crawling under the bushes or moving six heavy bags of mulch (even though I’ve done the spring mulching for years).
Then after a second bag, I was exhausted again. My leg still felt different but I thought the “pulled muscle” would get better. After a repeat on the third bag, plus one simple outing to my school campus for a meeting, my leg was dragging and I spent the rest of the day on the couch. I had lunch plans the next morning, but couldn't even think about driving. My friends brought over lunch and made sure I called the doctor.
I saw my primary care physician who ordered two MRI tests, but it took a few days to get insurance approval. Two days after seeing the doctor, my right leg felt totally numb so I went to the ER.
In the emergency room, my husband and I met with the neurologist on call. He was ready to explain the procedure for the brain MRI. I told him I was already familiar -- because I had one a number of years ago to rule out a brain tumor, and was diagnosed merely with dry eye.
He reviewed the previous MRI, and sternly said, “Why didn’t you tell me
you had multiple sclerosis?”
I can still feel my jaw dropping. He realized that this was brand-new information to my husband and me. That neurologist in the ER was the first one to tell us what the original scan indicated.
I’ve made so many excuses for MS symptoms over the years. For example, I’ve fallen... but have always had "two left feet". I’ve dropped things... but had been diagnosed with carpal tunnel syndrome by other physicians. At this time I don’t know if my life would be much different if I was diagnosed earlier (I do know that I would have gotten to a doctor immediately after that first bag of mulch!).
After that diagnosis, I spent five days in the hospital getting intravenous steroid treatments to reduce the swelling in my leg, and then stayed eight days in a rehabilitation center learning how to walk with a cane. During physical therapy, I re-learned how to walk again with balance and coordination.
There hasn’t been much change in my three MRI exams; I was told at my “six month” MRI that I was “stable”. I give myself nightly injections of Copaxone; as a silver lining, I have gotten over my fear of needles.
I am aware that great strides have been made in the treatment of MS... and this is extremely encouraging. I know that extensive research is ongoing and information is readily available. I hear stories about others with MS and how well they are doing with the treatment specific to their case.
My journey is just beginning. I’m sure there will be ups and downs along the way but I’m trying to stay positive. I want to think that with all the research and constant strides that the ups will far outweigh the downs for me.
My journey is just beginning... I want to believe that the great strides in MS research
and treatment mean my 'ups' will soon far outweigh my 'downs'.