I flicked through my MS diary the other day.
Looking back over the heavily-scribbled (and, yes, tear/coffee/wine-stained) pages, it charts my confusion, fear and ignominious entry into a whole new world, complete with a seemingly impenetrable language all of it’s own.
Trusted health websites always advise you to document everything, from the very first inkling that something is wrong – comes in handy for meeting with a Consultant who may just allocate you seven minutes (including an awkward silence when fumbling taking shoes off – will he notice my holey, mismatched socks?), if you’re lucky. And they may bark random, medically-sounding words at you.
So I did. A bit like swotting up for appearing on Mastermind, with specialist-subject questions fired every 18 seconds. I failed. Miserably. I was sent home with a leaflet about MS fatigue and the MS relapse telephone number. But I didn’t have MS? Confused? Me too. I didn’t understand the ‘multiple’ in multiple sclerosis. D’oh.
One of my first entries, back in June 2011 is, ‘why am I so hot?? Mum thinks it could be an early menopause, grrrrr. Noooooooooo!!!’ Ha! Looking back, that would have been the least of my worries, Tena Lady adventures to one side. And anyhow, I was quite enjoying the flushed-milkmaid visage I seemed to be rocking, after years of hovering just above the ‘palest of the pale Celtic face look’, i.e. close to corpse-like. Or Twilight.
Quite suddenly though, the language gets more technical- I have oligoclonal bands in my CSF, I have lesions in the subcortical, periventricular and deep white matter suggestive of demyelination. I am diagnosed with CIS. Nope, no idea.
According to my diary, I called the MS nurse later that month to ask about the MS hug, an excruciating tightening around my ribs. Normal. What about not being able to write properly? Normal. Pins and needles? Normal. Foot drop. Yup, you’ve guessed it. Over the next few months, I moved from CIS to possible to probable MS, as if I were on an evil, unstoppable conveyor belt.
I called the MS nurse again. Electric shocks in my neck? Normal. Falling over? Normal. Slurred speech? Normal. Stabbing pains? Normal. Wouldn’t it be great to have a pain that wasn’t connected to MS?
May 2012. My last relapse. My hands. Of all things. Crockery was smashed left, right and centre, my mum bought me plastic tumblers and my friends had enormous fun cheering me as I dropped things without warning. And all along, the excruciating, tedious, soul-destroying fatigue.
Late May 2012. Diagnosed. At last. An absolute dichotomy. Utter relief mixed with utter terror. The diary’s closed now. I keep my new notes elsewhere. Thanks to cog-fog though, I haven’t a clue where they are…
I didn’t write down a thing, not much point as my neuro is so busy its much easier to tell him
i’ve probably been having MS related symptoms since I was 16, so that would have been a huge diary if I wrote it all down for 10 years :p would have needed a forklift.
my medical file is getting big enough for a forklift :p
I wonder if mine is that big too, lol. Looking back,there were so many signs pointing to MS, but why look when you’re not looking? It all makes sense now – the fainting, the heat intolerance,the weird walk…..
exactly! knowing what we know now, lots of things make sense
Definitely. I was ‘diagnosed’ with swine flu a few years ago, but I now know it was a relapse, lol. No wonder the meds didn’t work!
I used to keep a diary and take notes to the neuro appointments to help me to remember all that I was experiencing, including poor memory! Until, for the second time, the neurologist said rather sarcastically ‘You have a lot of symptoms don’t you?’. AArghh! Being a good girl I didn’t punch the doctor.
So I gave up writing things down and stopped telling her everything. But when it came to providing evidence of what my difficulties are for my PIP application I realised what a mistake that was because there were things that hadn’t been recorded. So I have gone back to keeping records and will once again bore my neurologist with the details and will have to have ‘The’ conversation with her about her response if I need to.
Damned if you, damned if you don’t.
That’s exactly like me!!! I was scorned for pulling out my diary,but, hello, how else did they think I would remember everything??? Um, cog fog???
I was hurt, as for my first neuro appointment, I did as advised. Noted everything down. I was dismissed pretty rapidly (I understand now), but I didn’t understand then 🙁
Great blog post as ever.
My eye was caught by your mention of electric shocks in the neck. I have been getting shooting, electric like pains in the front left of my neck and I was wondering if it was my MS or something else. Due for my annual review next week so maybe I will…
Thank you! Could be MS? Especially if you didn’t have it before MS?
I used to get it terribly. I’d be in agony, but thankfully I haven’t had it in a while. Guess it’s only a matter of time!!
p.s. good luck at your review!
Writing to you from Courbevoie close to Paris. Your observations and recital of MS symptoms made me laugh until tears rolled down my cheeks. Yes, I too have MS and have started a blog about dealing with MS. Thanks for sharing your experiences and good luck!
Best wishes, Joanne
Thank you so much for your lovely comment!
Good luck with the blogging – I haven’t for a while 🙁
Must get back into the swing of it again.