The first time I couldn’t move my limbs I was 24-years-old. I was going through a bad divorce and my general practitioner (GP) attributed my symptoms to stress. I was diagnosed with Multiple Sclerosis (MS) three-and-half-years later after suffering from what I now know to be optic neuritis. Although I reported my symptoms, my then-GP opted for a mere blood test and didn’t even take the time to examine my eyes. I think this is why it takes so long to get a definite diagnosis.
When I called to get my results, my GP stated that I was suffering from a “virus”. Unhappy with this brush-off, I met another GP who referred me to two neurologists for a specialist’s opinion. One of these doctors directed me to an MRI center to run tests looking for “demylification”.
After running the test, my gut told me that there was something wrong and assumed it was a brain tumor given my abnormal neurological symptoms. A few days later, I picked up the results with my then-fiancé now-husband, John, and, while having lunch, snuck a look at the results. What I saw made me lose my appetite.
The words “conclusion Multiple Sclerosis” scared me because I had participated in the MS Read-A-Thon when I was a child; back in the 1970s it was all about death and disability.
“I have maybe 10 years if this is true,” I told John. He was dumbfounded and asked me to wait to react until we met with my specialist.
When we got arrived at the neurologist’s office, my Doctor silently reviewed my scans and test-results. I knew it was bad news and asked him to be frank in his assessment
As soon as he uttered the words “Multiple Sclerosis”, I began to cry; in my heart I was hoping that my initial assessment was erroneous. Alas, this was not the case. Instead, my neurologist sent me home with a handful of pamphlets and booked an appointment for me in two weeks’ time.
When I broke the news to my parents, they were devastated. Especially upsetting was the possibility of me ending up in a wheelchair.
However, after began to research the educational materials supplied to me by my neurologist, I became more hopeful. I reached out to others for assistance; friends with Internet access were far less common back then (can you believe that?)
Two weeks later I returned to my neurologist’s office with a smile; he was shocked and pleased. I just told him that since diagnoses I had educated myself and felt confident that MS normally isn’t a fatal disease. In fact, my most pressing question wasn’t about death, but life: Could I have kids? And my doctor answered “Yes.”
Almost 20 years later, I am not in a wheelchair as I initially expected. That said, I am constantly in pain and exhausted. And unfortunately I constantly battle with another unexpected symptom: depression. The psychological impacts of this disease have been incredibly difficult for me because prior to my diagnosis, I considered myself a happy person. Even when my first husband beat the crap out of me.
I can’t work anymore due to extreme exhaustion. However, I’m thankful that I have a husband who earns a good income (although he has Parkinson’s disease).
And I’m so thankful I was able to have my two beautiful girls who help keep my spirits up every day.
I hope this can help someone else who is struggling.
Are you struggling? Reach out and we can look for solutions together. Anyone have tips to keep thinking positive?
Vivian was diagnosed with MS in March 1999, although symptoms began in 1995. I previously worked as a financial adviser but had to retired due to the worsening of my symptoms. On the positive side, more free time allows me to work on my writing. I am 43 years old, married with two beautiful girls, aged 14 and 11 and reside in Australia.