I thought about getting your attention by being dramatic and saying December 4, 2013 changed my life forever but in all honestly it really didn’t. Nothing actually changed that day. It did however foreshadow what could come.
Let’s start this story by back tracking a little. In January of 2013 after feeling constantly run down with colds, the flu and all the usual winter ailments I made a resolution to get healthier so I started running. I never would have expected it but I actually enjoy it now, at least the not so long runs.
After 5 months of running I was feeling pretty good about myself, so in June when a friend of Wayne (my husband) mentioned she was starting a new roller derby league in the area I thought why not try it. In recent years I’ve realized instead of looking back and regretting what I didn’t do because I was nervous, I should just do it. Off I went to the information session and signed up. It has been challenging but amazing and you can read more about it on my roller derby tab.
In October I started feeling tired part way through roller derby practices and actually had to stop a few times because I was getting dizzy and had weird vision on my right side. It was like the right lens of my glasses had Vaseline on it. In November I finally listened to Wayne and went to see my doctor.
Having seen me for sporadic migraines before she thought this increase in headaches was likely related to hormone changes. “Remember you are more than 40 now and things change” she said. She did however decide to send me for an MRI to rule out anything more serious. I’ve seen this doctor since I was 14 and she is aware of all my family history and knew that I had lost a brother to a brain tumour when he was 3 and wanted to rule out a similar fate for me.
Off I went for my MRI and it wasn’t as horrible as I was expecting, especially considering I am a little claustrophobic. I just wish I had been warned about all the changes in sounds the machine would make. I would just get used to the noises when it would start to make different ones, like an alarm going off. Maybe I should have taken that as a sign of things to come. Just kidding.
I was at home with a nasty stomach bug and my doctor’s office called to schedule a “non-emergency” appointment to go over my MRI results. Since she never calls to discuss results unless something is wrong you can imagine what was going through my mind at that point. I’m just very thankful the receptionist specified it was a non-emergency appointment or I may have lost my mind waiting a week to see the doctor. As it was, I still worried.
After much thought, I came to a remote but possible conclusion, maybe they found evidence of a concussion from one of my roller derby hits or maybe even more remotely possible, they saw the beginning signs of Alzheimer’s. My husband kept telling me I was forgetting things that he claims he told me, so I was starting to think I was having memory troubles.
Imagine my surprise when on December 4, 2013 my doctor told me the MRI showed the possibility of Multiple Sclerosis (MS). Never had that possibility crossed my mind. I was in shock to say the least. Like so many people, I knew very little about MS and thought it affected your muscles and you ended up in a wheelchair unable to do anything for yourself. I kept seeing in my mind Annette Funicello being pushed around in a wheelchair looking so frail, which was such a horrible contrast to the vibrant Mouseketeer she once was.
My doctor explained in very basic, non medical terms a little about MS and it being caused when Myelin breaks down and signals from your brain aren’t transmitted properly. She used the analogy of phone lines. Myelin is like the wrapping around the phone cable that keeps the signals traveling at the right speed, to the right place and from getting messed up. When the Myelin breaks down the signals end up with static and those signals are not heard properly, or at all. What causes the Myelin to breakdown is the subject of much research. My doctor also went on to talk about the different types of MS. You can have episodes of “attacks” or “relapses” followed by periods of relative normalcy which can be months long, but you will eventually get progressively worse. Or you may get progressively worse over time without the periods of relative normalcy. The severity of the attacks and progression is greatly varied and impossible to predict.
She could not however give me a concrete diagnosis, for that I will need to see a neurologist. Unfortunately she recently had another patient referred for the same basic issue and was told it would be 8 months before she could get an appointment with the neurologist. My doctor did also caution me not to read too much about MS online and panic myself because not all the information is accurate but she gave me a few sites she trusted for correct information.
I didn’t ask many questions at that appointment or even retain a lot of what she probably told me that day (due to shock), but I have done a lot of online reading since that point in time – from the sites she told me and admittedly a few others.
From all my reading, a lot of things are starting to make sense for me now like: why I was recently tired so much, why I forget things (according to Wayne), why on occasion I’ve had incidents where I could not get my muscles to work to hold a pen and write (I assumed it was a pinched nerve and it may still be), why my vision can be messed up at times and fine others and why I have rotten balance. All these things can be symptoms of MS (and yes I know 1,000’s of other things too).
I will admit, I’ve had my moments of self pity and what I call “why me syndrome” but then my natural cheerful nature returns and I realize I could have problems considerably worse than MS. MS isn’t going to stop me from doing what I want. I will still run and complete my first half marathon next year, play my first roller derby bout and take my trips to Disney. Maybe I’ll even take more. MS may someday in the future change how I do things, but aging does that too.
I’ve had too many people close to me die way too young so I’m not usually one to put off doing things. Long before this year people have criticized me for spending money on holidays to Disney instead of saving for the future and I would respond with comments like “I’d rather do things while I can, so I have memories for when I can’t.” MS is not a death sentence by any means, but even more than before I will live my life to the fullest because you never know what tomorrow will bring.
I’m still waiting for my appointment with the neurologist to confirm the diagnosis but I’ll be okay with whatever the outcome is. I have the love of my family and friends, a roof over my head and food on the table which is more than many have, so I will be thankful every day for what I do have.
“Being happy doesn’t mean everything is perfect, it means that you’ve decided to look beyond the imperfections” – Unknown
UPDATE – February 5, 2014
Last month I had a temporary panic attack when I received a call from the MS clinic at St. Michael’s hospital saying they wanted to see me 5 days later. If they were getting me in so quickly this could not be good news.
Off I went to my appointment with a lovely neurologist originally from France. I loved her accent. At the end of the consultation she said she did not know what to make of the findings and wanted to call in a more experienced doctor. I waited around for another hour to see both doctors together. The second older doctor was just as perplexed.
In the end he indicated the findings were NOT consistent with MS but he was unsure what the lesions were. They are not cancer and the tiny ones are consistent with age and migraines. There are three that have a larger size of 7mm or more which are what they were really looking at but the curious thing about them is two of these are in matching spots of each side of my brain. I was even told that it could just be the way that particular MRI is calibrated that it is more sensitive to certain things.
What next? Back for another more detailed MRI in 6-8 months to compare findings. The doctors are NOT concerned and say I shouldn’t be either as I have no significant problems that cannot be attributed to other things. It could be the way the scan was taken or it could be an anomaly.
Just another instance of me being unique. No one ever said I was normal (whatever normal is).