Some of you have asked how my whole sorry MS story started, so here is the potted version.
Like many things in my life, it began with cake.
Leaving a friend’s house after enjoying a slice (okay, two slices) of delicious cake. I turned to say, ‘thanks for the cake!’ but it came out as ‘thanks, Kate’. Odd. I tried again. Same thing.
I went home perplexed. The Teenager was away for the weekend and over the course of the next two days my speech deteriorated, I was exhausted and my balance was shot. I knew something was seriously wrong.
I eventually ended up in hospital, talking gibberish. The clues were all there. The overwhelming tiredness over the previous six months, the dodgy walking, the simplest tasks taking forever. Throw in a childhood in Scotland and a parent with MS and I guessed the rest.
I assumed I would be diagnosed there and then (ha!) but that was just the beginning. Until I had a further relapse, I was in Limboland with no idea how long I would stay there. It took a year to hear the dreaded words, ‘highly active/rapidly evolving relapsing remitting MS’.
That year was probably the worst of my life. The lumbar puncture was a vile, medieval torture, the MRIs were terrifying and I lost count of how many blood tests I had. I lay awake at night, rigid with fear, worrying about the future. A lot of people say the day they are finally diagnosed is both the best and worst day of their lives. I agree. After all the waiting, the anxiety, the fears, it was a relief to finally have some answers. But it doesn’t make it any easier.
My main priority was to keep life going on as normal as possible for The Teenager. I would sleep in the afternoons, setting my alarm so I was awake just before he got home from school, duvet tucked away behind the sofa. I hid my anxiety. I became best friends with the pizza delivery man.
Those were dark, dark days. They are behind me now and an uncertain future still lies ahead, but isn’t that true for everyone? And as for cake, well, it certainly hasn’t put me off…
Mmmm, I love cake. I have always loved cake. Since my diagnosis, I have become even more passionate about cake although I tend to stick to just my favourites. Iced doughnuts, yum yums, Belgian buns and chelsea buns.
Prior to the start of investigations leading to my diagnosis, I had no knowledge of MS and its symptoms. Often, without notice, I would be unable walk properly or would slow down to a snails pass. I would overheat at the slightest hint of warm air. I would falter when talking as I would be unable to formulate and vocalise what I wanted to say.
There is a stroke history in my family and I have hypertension. So, on a fateful day when I couldn’t walk, balance or talk sensibly, I instigated an investigation into whether I had suffered a TIA.
Oblivious to the standard tests for MS, I was subjected to blood tests, fitness tests, brain MRI, upper body MRI, visual evoked potential, echo cardiogram and a lumbar puncture.
Fairly early on during the diagnosis, I was assured that I had not suffered a TIA or stroke. This was good news and reassuring. The continuing investigations seemed no cause for concern. Therefore, on that fateful day in the neurologists office when the phrase “we have confirmed your diagnosis, you have Multiple Sclerosos” I was stunned into silence.
It was a life changing moment in so many ways with so many different emotions.
Thank god then, that even with an MS diagnosis, I can still buy cakes and eat them.
Funnily enough, the first thing that was mooted about me was a TIA. I think especially because my speech was so badly affected, but I found out later I had a nice lesion on the speech part of my brain.
Must say, it was fascinating to actually see my brain on screen, lol.
It certainly is a life-changing moment. Nothing will ever be the same again. I remember walking/stumbling back to the car in a state of shock, even though I had expected the news. I can remember every detail of the room I sat in to hear the news. Just awful.
And yes, I do take comfort (far too much) in my cake habit. I especially like going to patisseries and drooling. Not a great look though! Right, am off to munch my way through the rest of my cake.
I was diagnosed with 2 strokes based on ct scans and symptoms, then on the 3rd event they did an mri which showed otherwise. Stroke dr said it was ms, a neurologist popped onto the ward and agreed with him. But, when I had my first app with a neurologist on Friday she wouldn’t give me a firm diagnosis without seeing a 2nd mri, but started me on vitamin D because that’s what they do with newly diagnosed ms patients!
So still waiting. Busied myself with a nice coffee and walnut cake at the weekend though.
Good to hear I’m not the only one who enjoys a nice cake!
But it really sounds like you’ve been pushed from pillar to post. I had to wait for a second mri too, but I really had to push for that, it wasn’t standard. I was having relapse after relapse so knew that there’d be more damage that would show up, and it did, and then some!
I hope you get some answers soon.
At least there was cake…
Was your friend’s name Kate, or was that just coincidence? Ugh, the memories. Mine started at my family birthday party, so my story does have cake too! My niece gave me some pretty earrings, so I took out my old ones to put in the new ones. At least, I thought I did. When I looked at my fingers, there were no earrings. I couldn’t feel anything. It was a bit troubling. Silly me, I thought it was carpal tunnel. Went to the doctor, who happened to have a brother with MS and suspected the truth right away (I learned later). The diagnosis happened pretty quickly after that. Not before MRI and lumbar puncture, though.
Sadly, she wasn’t called Kate, lol. So heartening to hear your MS story involves cake too!!
Shame you had to go through the lumbar puncture and MRI torture. The good news is though, never again will we have to have a needle in our spine, fingers crossed!
p.s. I wonder if there is a connection between discovering we have MS and cake? Most odd.
So great to read your lives, Christmas Eve I was told the news, you have MS, still have not taken it all in. But will keep going, and I want my cake and eat.
Thank you! I don’t think I’ve really completely come to terms with it yet myself. My first year ‘diagnosis anniversary’ is this month and the time has gone quickly. So many adjustments to make!