Fantabulous news: my latest MRI scan shows no new lesions.
The new neuro I saw said I was experiencing ‘paroxysms’ of MS. Not heard before, so I did what most of us do and googled it when I got home.
In other news, life continues as normal:
- My once semi-eloquent speech is still garbled and unintentionally hilarious.
- My brand new suede boots are scuffed beyond repair after stumbling all over the place and now join the graveyard of other similarly-afflicted boots.
- I have an ever-expanding collection of spectacular bruises from arguing with walls/bannisters/the shower.
- I brighten up the boss’s day, every day, with my slapstick moves. Who needs a banana skin when I’m around?
- I’m still single, and after a terrifying, tentative foray into online dating, I will probably remain so until at least 2073 (if I live to be 100).
- I
refuseam reluctant to squeeze myself into a tubi-dress and have hair extensions just to take ten years off my age. I wish. - I still love bacon butties in work. A habit I am attempting to break with the purchase of a Nutri-Bullet.
Anyway, apart from the usual MS gaffes, The Teenager is in the midst of GCSE Angst. Being a dutiful parent, I’ve ordered him his entire Amazon wish-list. An expensive mistake.
Along with the study notes, the revision books and the pens, he had to absolutely, totally, definitely have a Breaking Bad notebook which would of course ensure top marks in all subjects. They were all delivered yesterday and remain in a pristine package on the IKEA desk I painstakingly put together.
‘How’s your notes going?’
‘S’fine.’
‘Oh, um, lovely. Anything I can help with?’
‘Fed up wiv ‘elfy cereal, can I have Coco-Pops?’
‘Oh. Too much sugar?’
‘Never enough.’
‘Ha, that’s funny!’
‘Seriously. D’urrrr. And close the door behind you and take the kitten with you, ta?’
Oh, ok. I retreated and gathered up the laundry. And the kitten and her bizarre collection of hair bands.
So. My scan says I’m fine. I don’t feel fine. What should I do? How long do paroxysms last? Can I take a chance and buy a new pair of boots that I won’t scuff? And most importantly, will I stop speaking English with a German/Yoda-esque syntax?
‘Study, you will. Much learning achieve, aspire you can. Dark forces, encounter, you could. Succeed!’
thats good news about no new lesions!!
paroxysms for me have lasted the whole7-8 years I’ve been diagnosed and are still happening :/ get a few odd looks from people when it happens but I just laugh it off or cry if it hurt :p sadly any meds for it makes me worse :/
maybe put the boot buying off for a bit, unless they are on sale and then a few scuffs wont matter 🙂
I thought paroxysms were temporary?? The vertigo ones are doing my head in!
I think I’ll take your advice about the boot-buying. Would be too sad to see yet another pair ruined!
X
well the Trigeminal neuralgia went away because the nerves in my face were damaged in surgery, so while half my face doesn’t move right, it no longer acts up 🙂
if they are supposed to be temporary, no one told my brain that :p and while my leg might not spasms everyday, its def. at least every other day :/ and very violently, have to watch I don’t hit tables and knock things over :p
and Ataxia rares its ugly head a lot which is fun when people think i’m drunk at 9 in the morning…I actually walk straighter after a few :p
ugh vertigo ones would be horrible :/ hmm had to look that one up, apparently its called benign paroxysmal positional vertigo but you probably knew that already 🙂 hmm learn something everyday 🙂
as much as this might sound like me moaning, I know it could be a lot worse when it comes to this, so I just deal with it and try not to knock things over or fall over 🙂
Sounds pretty grim 🙁 I’ve definitely learned something new with the ‘paroxysm’ tag! The way I’m looking at it is, it doesn’t matter if it’s paroxysms or a relapse as it all feels the same to me (!) and anyway, I probably wouldn’t take steroids again.
It’s just the usual MS trickiness – we’re all so different and all have dazzling displays of different symptoms!
X
paroxysms are apparently not a relapse,so thats good 🙂 yeah I try to tell people that almost anyone with MS has different symptoms, some people understand why that is, others are just thick :p
“Do These Symptoms Signal a Relapse or That My MS Is Getting Worse?
No, they don’t. The good news is that these symptoms are probably just due to a transmission of nerve impulses across sites where they do not normally occur and where there has been previous damage. This can be caused by some sort of stimulation, such as irritating clothing or movement. An interesting note is that people often experience paroxysmal symptoms having not even been aware that they had damage before.”
from here: http://ms.about.com/od/signssymptoms/a/paroxysmal_utd.htm
learning a lot actually from you mentioning this 🙂
That’s brilliant, thank you! I’d never heard of paroxysms of MS before, only paroxysms of laughter, lol. All new to me and interesting. Whatever they are, they’re going on a long time and as always, the tiredness is the worst! Just had a two hour kip, meh. Such a waste of time.
X
Ordered your book to be delivered to Canada. Just got it. I look forward to reading it. After reading I’ll donate it to the local branch of the MS Society of Canada in Victoria, BC.
I enjoy your writing. Very funny.
I don’t speak with a garbled accent but I’m sure that sometimes I don’t make much sense.
Thank you so much! Speech still garbled and slurring (which is most embarrassing). It’s why I enjoy blogging so much – no one can hear me slur!
Hope you enjoy the book!
X
Funny it is!
Thank you! Teenager thinks it’s just sad, lol.
X
I wrote a review about your book on Amazon, and today I received an email from Amazon that a purchase was made of your book because of my review … All I said was the book was written with heart… I believe your book was purchased because you wrote it !!!!! Those paroxysms are reactions of your body trying to fix what needs to be fixed Keep doing what you are doing and don’t forget to smile ..Its contagious !!!
Hi Peter,
Thank you so much! And thank you for taking the time to write a review for me – it means a lot!
True, these paroxysms are the old body adjusting itself, just wish they’d finish what they’re doing and leave me in peace!
Reminds me of a chat I was having with a fellow MSer the other day. She said she felt she was in total remission, but thinking about it, I don’t think I’ve been like that since around a year before diagnosis – still got the heat intolerance, fatigue, dodgy walking and hands, speech, etc. Or is this just old age creeping up on me?!
x
I wish I had no more lesions… I think they’re probably growing as I type! My 11yr old thinks it’s hysterical when I get my words all of a cufuffle (is that even a word?!) Your book is amazing!
I’m not sure I’d even be able to say the word paroxysm, so I guess I’ll leave that out of general conversation at home! My mates would see the funny side if I tried to explain! Tell me if you find something good for your suede boots, as I fell straight into mud, after scrambling down the driveway into mud! I wouldn’t be concerned, but they were actual real Uggs that I spent too much on! That hurt more than me smacking my hip on the corner of my porch! BTW, I love your yoda-esque… It gives me many lol’s x
Thank you so much!
I have tried everything to bring my lovely boots back to life – brushing them and using a Sharpie on the totally scuffed bits. Will probably have to take to cobbler or the boss to get them to glue the sole back on properly, meh. Next time, I will get one of those sprays and completely cover the boots with protections stuff. Never bothered before 🙁
x