Last reply 7 years ago
JC, PML, MS…….. BFN

BFN (Bloody F*king Norah)

Hello all
Just got back from my 3 monthly neurology appointment, and it wasn’t great. (woop-de-shit Marjolie! now there’s a surprise)

*note for readers: words in brackets (like these) is what I’m really thinking at any given time. (hm, perhaps I should come with subtitles….rude subtitles, with big sweary balls attached.)

Anyway,
I’ve been tested today at the hospital for something called the JC Virus, has anyone heard of this? (Jesus Christ! (on a bike)) apparently JC can lead to PML (Piss Myself Laughing?) or progressive multifocal leukoencephalopathy to those in the know (however, I do not care for Pregnant Marmot Linguistics, nor any other variations there of.)

So, I’ve got to go and have another dye-job MRI scan (yay to number 4 and fingers crossed maybe i’ll finally be beamed aboard the starship enterprise with Jean Luc Picard, waiting for me naked holding a cup of tea. Damn, said too much.) anyway- to summarise, hopefully if I’m just having relapse number 3 (shitting shit it) rather than Progressing onto stage 2 of the world-MS-fuck-stick-championships.(poxy pox it) then there is no cause for alarm.
(be cool bird) However, I am feeling that terrible black hole trying to suck me back in.
(Danger Will Robinson Danger)

Cheesy Peas I would swear right now if I could think of some appropriate words.

Any words of wisdom dear folks, or will you, like me, PML? (this is pure comedy genius thank you MS for giving me lots to swear about)
Marjolie x
Black ‘Ole Location Lead Occupational Ceaseless Kitten Soloist

(Do I really need to spell it out?)

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stumbler
7 years ago

@marjolie, you must have watched the same TV programmes as me in your formative years!

Anyway, being positive for the JC virus on it’s own isn’t unusual. The risk of developing PML can occur as a side-effect of undertaking Tysabri as your DMD.

Having said that, there are JC+ folks out there that are on Tysabri. Yes, it is a risk with Tysabri, but it is a known risk and you are monitored for PML.

Hope this clarifies.

I’ve avoided the need for brackets as I’d worry what I might enclose! πŸ™‚


sag70
7 years ago

I was tested for JC before I started Tysabri, told it’s a precaution. Everyone carries the trigger, not all of us actually trigger the virus though.

Aparently and this is from my Neurosurgeon, Tysabri’s safe or as safe as it can be for up to 1 year. If you’re showing any indications that JC’s in your life they’ll stop the infusions.

Safely stayed away from adding any dark humoured comments in here πŸ™‚

Chin up, try not to stress and you’re right, this is all a load of “Black β€˜Ole Location Lead Occupational Ceaseless Kitten Soloist”


msue62
7 years ago

Never fear Smith is here!
Just because you are being tested doesn’t mean you’ve got it.
MRI scans are terrifying SO LOUD. I wonder if it’s that frightening to be transported anywhere and if it will ever really happen?
“Always look on the bright side of life!”
β™₯Loveβ™₯


mandela
7 years ago

Hey Marjolie,
My you have a way with words…….awesome!
Yeah, I know about the JC Virus. Are you on Tysabri by any chance? I know they test you for the JC Virus when you are on Tysabri because if you test positive it might lead to pml(btw @stumbler, dude, your like an encyclopedia for ms lol-great!) But I’ve been told that now they are beginning to test for it every 6 motnhs rather than 12, to which my response in my mind was, why were they not doing that from the second people started to die from pml, or even when the JC Virus started to run amuck. You seem to have a great attitude Marjolie, ms doesn’t stand a chance against positive thinking:)
Peace and Blessings


sunsetlily
7 years ago

@marjolie the most important thing is that you have a great outlook. It is a positive that they are not checking for this jc virus or pml but they are just ruling it out. Do you see how I played with the words to make it sound better? I have had 6 mri’s and always get the contrast. I just close my eyes and think of Johnny Depp because he makes everything better. Stay strong girl.


gav
7 years ago

Most of the science stuff was already covered by @stumbler, but yeah testing for the JC virus is normal. I’m unsure on the exact figures, but I believe between 60 to 80% of people are JC positive anyway, and the best bit, you can go from negative to positive (they don’t know the cause, whoop de doo). All JC+ means is that your risk of developing PML is increased, its still over 1 in 400 though. The first year is basically a freebie, with it being almost unheard of to develop PML. On a personal level, I can tell you for the 18 months I’ve been on Tysabri I’ve been relapse free and on my yearly MRI I had no further lesions, plus the ones that were there had shrunk in size a touch too πŸ™‚


reddivine
7 years ago

OMG… nearly PML there! Jean-Luc, naked, be still my heart! You have a wonderful sense of humour, and words will NEVER fail you.
Ah and “danger, Will Robinson, danger”….priceless!


marjolie
7 years ago

Oh my… what a mine of informative information you all are, thank you my material evidence geniuses!

This is great news, I wasn’t happy with this news last night, but I wasn’t worried either (heh, odd) maybe that’s the whole deal with MS; you stop worrying about what will happen all the time, because this stuff changes all the time, so in conclusion, shit happens.

@stumbler you are a knock-out Mr. I thank you for your ever calm and personable charming nature of issuing the facts directly with no need for swear words (because that’s just bloody childish) heheh x

If I’m JC negative then it’s Tysabri for me, just like you @sag70, I hope it’s going well for you, as I know little about it, it’s just another thing not to think about (and bloody hell am I getting good at doing/not doing that? you betcha ass I am) Well done for not including random expletives x (he has much wisdom, you must learn his ways. But then again, balls to that for a game of bingo):) x

Hey Smith @msue62 I will not fear, I will fight them on the beaches, and I will never surrender! If all goes well I will beam you up for a little mini-break on my home planet, it’s smashing here, most things are purple and cats talk (more on this infernal dream I had last night shortly…) alt 3 and love back atcha super lady x

@mandela a 6 month check will not be necessary as I believe in 6 months I’ll have nailed MS with a head lock it’ll never get out of.
heheh x Peace and Tolstoy with ice cream and chocolate chips (mm, hungry)

@sunsetlily, can I borrow Johnny Depp? I’m bored with David Essex (he keeps singing over the racket when he should be doing something else.)hehe thank you sweet lady, plays on words? I love ’em! x

@gav “On a personal level, I can tell you for the 18 months I’ve been on Tysabri I’ve been relapse free and on my yearly MRI I had no further lesions, plus the ones that were there had shrunk in size a touch too”
This is awesome news, totally mind-blowing…so pleased for you, and a little less worried (If at all) so, so pleased,live long and prosper x πŸ™‚

So then in other news, I had a dream about 3 scorpions invading my home last night, one stung my pet rat in the nose which then turned it into a dead cat. I did CPR and mouth to mouth on the dead cat which came back to life and starting talking. It then divided into 3 more cats which, with psychic powers found the scorpions, I killed one with a rolling pin and it turned into Rod Stewart. I phoned the police, told them I was a murderer, but as it was Rod Stewart, they didn’t care and instead sent round an alligator to finish him off. Me and the remaining scorpion and the talking cats then sat down to have cake with ‘death sauce’ (made of nuts and bolts) and look at each other with telescopes.

Shit the Bed! Roll on brain scan number 4. I can’t wait to see what’s going on in there!! πŸ˜€

Marjolie x


marjolie
7 years ago

@reddivine hehehe words often do fail me as I’m laughing so much πŸ˜€
Hope you’re doing well sex-pot x


cedelle
7 years ago

im on tysabri AND im JC+, however- tysabri has improved peoples lives soooooo much that for me, itd worth a risk. anyway, might get hut by a bus tomorrow, cant worry about things that havent happened yet! thats my opiniin on it anyways :)) xx


celinec
7 years ago

Ok, I’m now feeling I need an interpreter for this post!:p


sag70
7 years ago

@cedelle – How long have you been on Tysabri being JC+?


reddivine
7 years ago

Wot a dream! dunno what yr on, but a therapist might be needed to sort that dream out! Sexpot? whos bin talking??


stumbler
7 years ago

@celinec, if you need more information, post up a question and we’ll have to see if we can satify your thirst for knowledge.
πŸ™‚


janep
7 years ago

Aah.. @marjolie.. we should bottle you as a tonic for the soul! I’m sorry you had such a horrible day- I hope the input of our resident genius (that’ll be you, @stumbler) helped allay some of your fears about the Portly Manager Lady. And I’d like to send a message to the Black Hole- back off! You’ve had your turn, she’s OUR Magnificent Strumpet and you can’t have her back right now- we need her wisdom, verbosity and swearing right here!

So there. Sorry for the outburst, I felt it needed saying!

It was the cup of tea in Jean-Luc’s hand that really spoke to me… xxx


cedelle
7 years ago

I have been JC positive since the off! Only had 4 infusions so far x


marjolie
7 years ago

Thank you ladies and gents for sharing your knowledge and experience. This is massively helpful, and, a real window to your time with those bloody Multilingual Strippers who so invade our lives on any given opportunity (the miniscule sluts).
I think anything is worth the risk, being dangerously opportunistic and cavalier about my own well being seems to have diminished fear of the unknown, so hurrah to that.

@cedelle good on you lady, that’s the spirit x who wants to die of old age when you can get hit by a bus tomorrow?( woo if its full of babylon-five conventionists then that’s a small victory for the star trek kind)

@celinec I have a dictionary specifically for those who need Marjolie-detailed interpretations.
See http://www.whatthefuckissheonabout.com replace the hash tag # with btly for recipes, or double right-click on my face for porn.

@janep I do actually come in bottle form, Β£16.99 per cubic ml. Drink before breakfast, and last thing at night. It won’t help at all but it will make you piss yourself laughing for no apparent reason.
Black Hole has been told, I will not allow it to take over again, but, it so wants to – ‘back off Black Hole, I’m needed here on Earth, if Verbose is needed I cannot refuse! Enguard- Black Hole! I poke you with a wooden spoon of complexity and the infamous alternative abbreviation.
Jean Luc speaks to us all (in a sex-addled-coquetish-shakespearean silver-fox-Earl-Grey- drinking-daintily-sort-of-way)

I need to lie down immediately.
Make it so *feels all funny*


cedelle
7 years ago

lol @marjolie… a car, truck, van will do! xx


lisa89
7 years ago

I’ve been JC+ since starting tysabri last January! I was terrified at first but the scan every six months gives u a bit of relief coz they will spot signs of PML….havnt had a relapse since thank god and my last scan was the first 1 since I was diagnosed where I had no new lesions


danrb80
7 years ago

Right I am going to sound out of the loop (like I have been beamed into a parallel universe by JLP himself). But WTF (what the fiddle) god this bracketing is catching is JC.
I am at red alert and my shields are up as I don’t know this strange new abbreviation (I cannea take nae more). Ok enough of the Star Trek already.


stumbler
7 years ago

@danrb80, here you go, to satisfy you thirst for information:-

http://www.tysabri.com/pml-risk.xml#jc-virus-test

πŸ™‚


marjolie
7 years ago

@danrb80 – first of all, hahah you complete Trekkie! πŸ˜€ Ha takes one to know one. x I was confused too, I’d never heard of it, but thanks to the miracle of technology @stumbler and many others here were able to answer that very question. As if MS isn’t enough to juggle, they throw more abbreviated nonsense your way just for good measure. It’s highly illogical, but that’s humans.
Conclusion: It’s nothing to worry about unnecessarily, it will be tested rigorously and if it is something we’re lucky enough to have it’ll be monitored with precision.

Hope you’re feeling ok, how are the eyes? x
(brackets are the totally way forward- I bloody love covert honesty) πŸ™‚


danrb80
7 years ago

@stmbler thank you very much that was useful πŸ™‚

@marjolie my eyes are alot better now, not fully recovered but hey better than they were (im kind of a “glad i have the glass” rather than worrying about whether it is half full or empty kind of person.). Yes (blushes) i am a bit of a trekkie (sad I know).
So for another abreviation you might like (if you are a trekkie
) is LLAP πŸ˜‰


marjolie
7 years ago

Hooray @danrb80 so glad you’re eyes are doing a bit better and that you have a glass; being neither half full- nor half empty, is completely logical
I Spock salute you Vulcan Style withe the words “LLAP” to you too πŸ˜€ (heheh /such/ nerds!) πŸ˜›


steadmeister
7 years ago

I got the call yesterday that I’m JC+ and have read all the posts here and you’ve given me the comfort to go for it with tysabri which I have been offered. Statistically I’m told now its 1 in 1,700 chance of PML which seems 3 times less likely than having MS in the first place so I guess that would make it pretty unlucky huh! Lisa89 and Cedelle thanks particularly. Marjolie Something tells me i guess I’m going to spot you or recognise your dulcet tones in the infusion unit if you’re there!


marjolie
7 years ago

Hooray and hello to you @steadmeister, so pleased you’re not afraid to take a plunge with Tysabri, it’s not been offered to me yet as I have to wait for my blood tests to confirm one way or t’other, but you can bet your ass I’ll be verbalising at infusions if I do go down that road (I’ll be the one asking for tea instead, or some other more soothing ‘infusion’.

(If you hear me, then order the nurse to double my dose, immediately. heheh) x Let us know how you get on πŸ™‚

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