March 3rd to 9th marks the annual Multiple Sclerosis Awareness Week encouraging people everywhere to take action to help others learn more about the condition and what they can do to make a difference.
In this guest post, Sarah O’ Connor shared with us her journey after being diagnosed with MS. The 23-year-old explains to Her.ie her initial reaction to the news due to the lack of public knowledge about the disease.
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My name is Sarah, I’m 23, from Dublin but live in Cavan the last five years. I had my first MS “attack” when I was 20, but they missed that and I wasn’t diagnosed until I was 22.
It started in February 2011 when my balance was off, I felt extremely sick, really bad vertigo and I went to my GP who told me I had a virus. It got so bad that I ended up going to Cavan general to be told I had a virus known as “labryinthitis” that lasted 15 weeks then it went away and I was fine.
Fast forward to June 29th 2013, I had a few drinks that evening, all was good and went to bed only to wake up, I remember my nose was blocked and I said to my partner “I’m going down for a smoke and a cup of coffee” only to find my speech was slurred. Anyway, I went to get out of bed only to find my left leg felt funny and went to walk down the stairs and I couldn’t lift my left arm to hold onto the banister! So I thought like the “labryinthitis” that I must have a bad virus.
I waited it out until the Monday morning and went to my GP who told me I needed to go to hospital, as it could be a stroke! So off to the hospital I went, they done a CT scan, an MRI, took lots of bloods (16 vials), and while they were waiting on the results they put me in a stroke ward. The MRI’s alone with the bloods confirmed MS and thankfully didn’t need a lumber puncture. I was out in IV steroids and was back to myself in a couple of weeks.
I met with a lovely neurologist, Dr Killian O’ Rourke, on the 18th of July who officially diagnosed me with Multiple Sclerosis. I had innumerable lesions on my brain and he told me I would be starting Gilenya soon. Gilenya is a disease-modifying drug. It does not cure MS; it just slows the disease down and lessens the severity of the attacks.
While I was waiting to start my medication I relapsed again in October. This time it was the right side of my body. It went completely numb. Hot felt cold to my skin and cold felt hot. I had more MRI’s that showed I now have a lesion on my spine and so I was back in hospital again for another week, after more steroids I was back to normal within a week or two.
I started my medication (Gilenya) in November at the Institute of Neurology in Dublin located on Eccles St. where my MS nurse Jackie Scott is based, and I haven’t had any more attacks since.
Although I look okay on the outside, I still have damage on the inside to my brain and spinal cord. My lower right leg is still numb I have a shaky left leg and hand (although my left hand has been shaking since I was about 19, I never thought anything of it) among other things.
When I was told MS, I thought I was going to end up in a wheel chair and disabled like that woman Marie who went to the high court to fight for her right to die. Apparently, she had a rare form of MS that only affects 2-5% of people with MS and the majority of people go on to live a fairly normal life.
There is no cure for MS, only drugs to slow the disease down, and MS Ireland are brilliant. It can be a debilitating disease, which affects more women than men, and there isn’t enough awareness made about Multiple Sclerosis.
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Thank you to Sarah for sharing her story with us.
For more information on the condition you can check out MS Ireland.
