The Early Signs
Hindsight is a wonderful thing. Not sure who said that, but they knew their stuff. Looking back, I can now see that I had MS symptoms long before I was diagnosed. Lots of things that I couldn’t quite put my finger on, which niggled away at my thoughts and feelings.
I think I can trace it back to when I was a teenager. In the midst of questionable hair and clothing choices (purple hair mascara and Charlie Red perfume anyone?) I had some eye problems that my GP and optician couldn’t really give me answers for. There was nothing “in” my eye, but I could see shapes and squiggles floating across my vision. I’ve had this for almost 20 years now and while it isn’t a definite MS symptom, a quick browse of other MS forums show that they can be pretty common. At the time, it was just one of those things, and I had bigger things to worry about like my Leaving Cert (and where I was going out after I’d finished my Leaving Cert). My mum tells me that I also complained of pins and needles on occasion, which I don’t really remember, but that’s one of my daily symptoms now.
In my early 20s my balance was shocking. I couldn’t walk down a flight of stairs without hugging the wall. I would go to walk through an open door, and veer straight into the door frame. I took some epic stumbles which were blamed on stupid shoes and wonky pavements. The days I tripped over flat ground in runners, I didn’t always tell people about.
By the time I was 25 or 26 I had some symptoms in my right arm. I had numbness for no apparent reason. I was living in Dublin, so had a different GP. I don’t think he really understood what I was trying to explain to him- to be fair, neither did I- but he dutifully packed me off for an MRI. Which showed up nothing? I now take that as a good sign, as I like to think I didn’t have any brain lesions back then. Or if I did, they were teeny. At the time, though, I was left none the wiser, my arm cleared up by itself, and it was just another one of those things.
Fast forward to 2010, when I was 29 and the whole lot came tumbling down on me. I was so unwell, but I didn’t notice it at the time. I gradually got more and more tired and stiff and awkward when I was walking. I spent most of the time off work asleep, and dragged myself out of bed every morning. I cried a lot. I wasn’t sure why I was crying, or why I felt so awful, but I knew there was something wrong with me.
Around April, the symptoms upped their game, and attacked me from all angles. It started with a numb head. Well, on one side. Then I had a numb face, and shoulder. Eventually it spread to my right hand. I couldn’t feel my hand or head, so washing my hair was a disaster. Thankfully the purple hair mascara days had ended.
By this stage I had a new GP. I honestly think that without her experience, I could still be undiagnosed. I went in to her 3 times over the space of a few weeks. Visit 1 was for my numb head and face, and I was given anti-inflammatories. I was allergic to them, and got an itchy head. You know the head I couldn’t feel properly? I scratched it with my (unfeeling) hand until I made myself bleed. The next visit was when my hand got so bad, I couldn’t write my name. We changed tack, and thinking I had probably trapped a nerve somehow, she changed the medication I was on. On my final visit to see her, as a follow up to the numbness, I told her about the “funny new symptom” I had for her. When I nodded my head, I was getting tingly shocks down my neck, back, and legs, right down to my toes. I now know that this has a name (L'hermitte's sign) and that this was the final piece in the jigsaw for my GP. She straight away took me off all the medications she’d given me, in case they were masking other symptoms, and sent me to a Neurologist.
Once I got to the stage of seeing the Neurologist, my diagnosis was pretty quick. I had blood tests and scans and was taken in as an in-patient to go on a steroid IV drip for 5 days. The steroids were to counter the relapse I was having. I figured I had been having smaller relapses or episodes for a few years. After I got home, I had more steroids to take for a couple of weeks. They made me sick as a dog! But they worked, and gradually I got better.
At the time I was too poorly to think very much about my diagnosis, but afterwards I started to digest the information I’d been given. To be honest, I am probably still digesting it now. It has been hard at times, and nobody knows what the next few years will bring, but I am glad I was diagnosed when I was, at a time when I could deal with it. As a teenager or in college I think it would have stopped me in my tracks. Instead, it has given me opportunities that I never would have imagined possible, and introduced me to some of the most interesting and entertaining people I know, and for that I am very thankful.