DjBlack 21/11/11
Last reply 6 years ago
New to this and MS

Hey all … this website got pointed to me just today. Only had MS going on 12 months annnnnd still trying to work out what the hell is going on haha. Oh well, I’ll roll with it either which way it takes me.

All the best.

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T
6 years ago

Three and a half years later and I still sometimes don’t know what’s going on! 😀


Gav
6 years ago

Never mind my MS, I’m just trying to get my head round life in general lol


DjBlack
6 years ago

haha yeah it is a bit like that isn’t it. My thing is I didn’t even have an inkling I had this until I got knocked out playing rugby and got an MRI and they were like hey … you could have MS. Go me lol


Lus
6 years ago

I don’t think ill ever work it out!! 6 months down the track and I’m still in shock! Did you have any symptoms at all?


DjBlack
6 years ago

Not that I can remember really. I mean even after reading how many different symptoms there is there was no way I could have gone ‘oh … must be MS’. I had (still have) numbness in my pinky finger on left hand but thought that was just pinched nerve in elbow and neck … that was pretty much it until they did the scans, lumbar puncture etc.


DjBlack
6 years ago

Not that I can remember really. I mean even after reading how many different symptoms there is there was no way I could have gone ‘oh … must be MS’. I had (still have) numbness in my pinky finger on left hand but thought that was just pinched nerve in elbow and neck … that was pretty much it until they did the scans, lumbar puncture etc.


T
6 years ago

@ DjBlack – Do you still play rugby? I’m a hockey player and when I went completely numb down one side I thought I’d pinched a nerve too! (Obviously the MRIs and LP negated that idea).


GMG
6 years ago

It’s very easy to ignore sensory symptoms thinking it could be something else!


DjBlack
6 years ago

hey T, No haven’t played since I had the head injury .. the whole double seizure and loss of consciousness and subsequent numbness etc on RHS kinda put me off it. Kills me not to play but I have taken up a roll of Professional Spectator … who knew heckling and drinking beer could be so much fun!

I asked my neurologist and she think the head injury my have triggered a massive flare in the lesions or something hence the loss of feeling etc. Guess i’m kinda lucky I got diagnosed to quick


jrmcg1
6 years ago

DjBlack, you da man. We are in this shyte together and there’s tons of support here on the site when you have questions and stuff. You will feel good enough to get back into sports! It took me a while after diagnosis and finally I’m back into exercising / messing around. But don’t stop drinking beer either, mk? promise?


DjBlack
6 years ago

Cheers jrmcg1. Yeah it’s good to be able to say stuff and have people go ‘oh yeah i feel a bit tired like that sometimes’ … beats having to explain why. Yeah I’m in no rush, baby steps get fit again .. I have to before the next Super Rugby season starts (kind of equivalent to Heinekin Cup in UK). If anything my beer consumption has increased … it eases the pain 😉 haha.


Mawson
6 years ago

When walking more being drunk used to help me wobble the right way!


Lus
6 years ago

Wow mate you must have really had a shock with your diagnosis! Its crazy that once your diagnosed a few things click into place and make sense. I think a few drinks really help the situation a lot though!!


DjBlack
6 years ago

Not really to be honest Lu … it was more like oh, okay … don’t really feel any different but sure I’ll take drugs to help it haha. I had a heap of other things going on in my life and being diagnosed with MS was nothing compared to what a few people I know were/had been through. Haha I keep reading that sunlight is good … so I got really sunburnt yesterday, but now have a pretty knarly t-shirt sleeve burn on my arms haha

Beer makes everything better 😀


Lus
6 years ago

I wasnt that brave. I cried for a whole day even though i had been given a warning that i might have it! Well its the start of summer where i am, so ill be able to work on my tan and let you know if the sun actally works, lol! Not a big fan of beer but Bacradi does the same job!! 🙂


Anthony1
6 years ago

I have had MS for over 15 years! I can tell you one thing, never give up or lose the fight because that is what it is. A FIGHT!!!!!!!!
All the best.


wisey1980
6 years ago

“roll with it” is the best attitude to have DjBlack! I have had it since 2007 relapse /remitting…. don’t seem to be doing much remitting at the mo but still smiling. I find my freakish body rather fascinating, discovering blindness, not being able to walk, and think sometimes ( but my friends and family don’t actually think that is my MS!!)…..ofcourse its not fun at the time but you get through situations by being positive and taking it with a pinch of salt!! Hell, at least we have these stories to tell!!


DjBlack
6 years ago

My mum did all the crying Lu 🙁 must be tough on parents for something like this to happen to their kids. But … I’ll drink anything if someone else is buying Lu haha. Summer for me as well … holidays soon I plan to buy a kids pool, sit in the yard and be merry for a few weeks and probably get epic sunburnt in the process but have full all the same! haha

Yeah wisey1980 … it is the sad truth but it most definately could be worse. Everything has its ups and downs just gotta take everything as you say with a pinch of salt and we probably learn a lot about ourselves during all this as well.


DjBlack
6 years ago

Ah sorry Anthony1 forgot you lol … cheers mate, will do. It has only just begun but I’ll keep on trucking.


Lus
6 years ago

Yeah mine cried for days! Have fun with your pool, not a bad idea really. I might have to invest in one myself. What country are you from??


DjBlack
6 years ago

Australia


T
6 years ago

I agree – sometimes it can be tougher on the people around you. It was really hard for my Mum to see me being diagnosed because she felt really helpless for once knowing she couldn’t “make me better.” But now, she’s my rock. She comes to all my appointments and is the one person I can always turn to when I’m having a really bad day and she will always take on any extra burden if I can’t cope.

While you’re enjoying your pool in Australia, we’ve finally started to feel the winter here in the UK – it’s freezing!!!!! 🙁


DjBlack
6 years ago

They are the kind of people you need to have.

hahaha yeah … I spent all day yesterday at cricket test match Aus v NZ … In the sun drinking a few beverages.


leyla
6 years ago

Hiya All,

I haven’t read this entire thread but, I was extremely reluctant with medication for the first year. I’m now on Rebif, it was the drug I wanted to take instintively.

The medication is great, reduces a relapse by 1/3rd (yay!)

If life gives you lemons, make lemonade.

Just remembering that everyone has their difficulties and MS is only a tiny fraction of who you are.

I was 17when I first lost my vision in one eye, fortunately or unfortunately, I’m much too stubborn and once I’ve decided on something, I won’t budge. Somehow I didn’t realise that I couldn’t see? Anyway, I’m just saying that, the fantastic person you are, just got better. It takes spirit to deal with something like this.

(Can’t believe I sound so positive my friends simply would be shocked!)

Chase your dreams whether you’re running, walking, or rolling =]

Leyla


DjBlack
6 years ago

Hey there Leyla,

Yeah I just kind of fell into being diagnosed lol, it’s all in the comments above pretty much. I’m on Rebif to! :O … I can’t really say that I’ve had any relapses apart from maybe a small one at the start of the year.

Sound like me though … I’m just going with it and actually going to join up with MS Qld and become an Ambassdor for MS so share my story and stuff I guess and let people know that it isn’t the end of the world when diagnosed (obviously some things may have to be let go depending on the type/level of MS you have).

It’s almost holidays for me so I like the rolling part haha … beers, BBQ’s and sun 😀


michaelm1025
6 years ago

Hi,
I was diagnosed yesterday with MS, considering Rebif or Betaferon, anyone with experience with these to compare?? Betaferon appeals as i don’t need to keep it chilled!
Cheers, Mike.


GMG
6 years ago

Hi Mike, Don’t know if you’ve been pointed towards this website or not?

http://www.msdecisions.org.uk/

Has lots of info on the different treatment options and also has a really good decision aid which asks you questions and then comes out with the pros/cons of each treatment for you…. Hope you find it useful!


DjBlack
6 years ago

Hey Mike … Rebif is a betaferon I think … or are you meaning something else. I’m on the Rebismart auto injector with the Rebif and it is so crazy easy to use and works for me

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