I got final diagnosis yesterday :( Took a long time to come through as its a complete prick of a thing to diagnose.

So, it looks like I got MS for Christmas. f*** you Santa, how bad can someone's naughty : nice ratio be? Whatever happened to lumps of coal?!

Anyone here have MS, have a relative with it, or know much about it? I have to pick a treatment drug - I'm leaning to Betaferon purely cos my neurologist says he'd like to try it first.

I've done a lot of internets reading but nothing really is helping to pick a treatment!

That sucks man :(

I shall read 10,000 books next year for you.

s*** sorry to hear that hogfather.

I know one person with it, but not well enough to know what kind of treatment they're on etc...

Indeed, go forth and read ffs :p

They reckon that as they have treatments that slow it down there's a good chance I won't be too f***ed up by the time the cure arrives.

Hope so anyway!

Bugger, Hogfather.

I spent a month this year as a student on the MS team at the Royal Brisbane Hospital and saw a lot of positive results with betaferon - but it's very much an individual thing, so you need to discuss all the options with your doctor. Professor Pender is the MS guru in Brissie - he works at the RBH.

Good luck.

can stem cell stuff help?

Yeh according to the MS Society's website that's something they are chasing - at least the legislation changes were seen as a good thing.

I'm not sure how helpful it is tho.

man, it cant be a bad thing

thank god common sense has prevailed over religious nutjobs who want us to continue living in the dark ages

No s***.

If it sucks 10 years off the cure timeline that could mean the diff between a permanent problem and being in good shape when the cure comes!

sorry to hear that dude :(

don't want to hijack or anything but i know kinda how this thing feels.

my missus was diagnosed after 9 months of misdiagnosis, with a basal cell carcinoma on her scalp. by that time it had grown from 2mm x 2mm to 20mm x 22mm. She needed a skin graft from her arm, the operation was 2 months and 1 day ago. a week after that she found out she had high levels of abnormal squeamous cells in her cervix, the precursor to cervical cancer. so a week after that first operation, she had another to cut a chunk of her cervix out. a week after that, we found out the graft and the donor site both got infected, which meant that only 40% of the skin remained of the graft, lengthening the time taken to heal, and just as we thought we were out of the woods, her mum got hit with a breast cancer diagnosis that we found out about yesterday, 2 months exactly after my missus' first operation.

the one thing i have found out after going through this, is that you cant change what has happened, you cant get angry with it even though you want to, you cant get depressed about it even though thats a natural reaction. you have to seriously look at what lies ahead, what therapies, medication, recovery avenues and basically what you can do, to make sure that it stays in check and that you remain on top.

good luck with it all dude, and i hope that our medical research moves quickly enough to sort you out asap.

s***, good luck hogfather and tung's mrs's and family

One of my cousins has MS but I'm not sure what they're doing about it. I do know they haven't let it affect them and have stayed positive which is probably one of the best things you can do. Good luck with whatever you decide.

Sorry to hear about the Mrs Tung :(

the one thing i have found out after going through this, is that you cant change what has happened, you cant get angry with it even though you want to, you cant get depressed about it even though thats a natural reaction. you have to seriously look at what lies ahead, what therapies, medication, recovery avenues and basically what you can do, to make sure that it stays in check and that you remain on top.

QFT

Getting all emo isn't going to help me, severe depression and anxiety could actually trigger an attack so f*** that! Fortunately its been suspected for a while now so I've had some time to bend my mind around it.

The goal is pretty simple: stay as healthy as I can for as long as I can to be in as good shape as possible when the time comes. They WILL cure this thing, and therapies WILL improve, but the likelihood of repairing damage already done is unfortunately a lot lower.

The sooner I start treatent the better the long-term prognosis. hence the need to pick a medication and run with it.

Edit: I suck @ HTML

Getting all emo isn't going to help me, severe depression and anxiety could actually trigger an attack so f*** that!

wow, i had no idea about that. But yeah what you basically said is the key. you said you had suspected it for a while now, what lead you that way? if you dont mind, what symptoms etc did you experience?

I’ve got an auntie with MS, she leads a pretty normal life for a grandmother / wife of her age group (mid baby boomer period).
The MS doesn’t impact heavily, she still gets out and about, just takes life easy.
Occasionally she needs a walking stick for assistance and has a “scooter” wheelchair for long walks to the store but that is likely because of a combination with her age as well.
Overall the MS rarely restricts the activities she can undertake.
Her and her husband just got back from a 3-month trip around Queensland, without much trouble. Recently we spent the day on a small speedboat on a lake north of Sunshine coast, winds made the water choppy and it was a very bumpy hard ride but she was fine.
She has bad days where she is bed bound, but they are rare.

Doubt you’ll be a cripple

hey, dont ms sufferes get to smoke weed?

session at hogfathers place

Tung, no offense.
But it's not really appropriate to say you know what he's going through by being by your missus' side and empathic to her situation.
Though best wishes to you and your missus.


Hog, How old are you? Do you have children?
Also best of wishes mate.

sorry loki, no offense

but what my missus went through, i went through as well. i felt the anger, the depression, the pure despair and the drive to get past it and make sure it didnt envelope her/me.

So i think im at least partially qualified to make a statement like that. If hogfather believes that i am speaking a crock of s***, then i am happy to apologise and nuke/delete my posts. but i felt that i could give something to this discussion and let him know how i/we dealt with the situation.

Good luck Hog Father. One of my best mates has MS. He lives a wicked life - i think he has a little too much fun though if you ask me.

Nah you're right Tung, thanks for the reply mate!

I know what you're saying - the diagnosis has hit my wife pretty hard too. Its not the same as taking the news yourself, but as the other half, if its any sort of a decent marriage a spouse is going to be empathic and sensitive to what's happening, and experience a lot of the same sorts of emotional issues.

Yvonne has her own anxieties to deal with, different to mine. While I face the possibility of debilitating decline, she has a prospect of a long marriage with someone in that position. Until we learned more, she was worried about fatality. Our financial prospects are thanks to MS markedly down and we need to make some considerations for the medium and long term. She's integral to all of that.

My Mum bawled her eyes out when she heard :( She's OK now though.

Hog, How old are you? Do you have children?
Also best of wishes mate.

Thanks for the wishes Loki (and everyone else) - I'm 31 years old, have one adopted son, a bit over 3 years old.

We're (still) planning to have another kid next year. But we won't have any others after that as we just don't know how much of an impact the MS will have on the family long term.

Long term prognosis for MS is so hard to predict. It will depend how well my particular condition reacts to the treatments, and how many attacks I get in general. About 50% of MS people are independently mobile after 15 years, and the figure will get better as the impact of new treatments is felt.

So its not the end of the world, and thank f*** its not cancer. I face injections several times a week for the forseeable future, and its possible that in the medium term I will have some hefty attacks that could knock me around a fair bit.

You don't die of MS, you die with it. While a cure is being hunted eagerly, they've been after it a long time and its quite possible it won't come in my lifetime - many people have waited for a cure that didn't arrive, at least I have a real treatment.

Life expectancy is a little lower than normal, due to the impact on general health and ability to exercice but not significantly.

can stem cell stuff help?

Not while the church of heads-stuck-up-their-own-asses running the country it won't :/

And yes. MS is not fatal. Common misunderstanding.

Thanks hog, you are right, its not the same, its probably a bit more dulled hitting the spouse, but you are right about the differing anxieties. its not an easy road by any means, and you'll find you will become 1 unit because of it.

What do the attacks consist of? i had a quick squiz on wiki but couldnt find any definate information.

What do the attacks consist of? i had a quick squiz on wiki but couldnt find any definate information.

Loss of motor control and in extreme cases, general brain function.

What do the attacks consist of? i had a quick squiz on wiki but couldnt find any definate information.

An "attack" or relapse of MS is where the body's immune system attacks the myelin covering on a central nervous system nerve or group of nerves - consider myelin plastic insulation on electrical wiring, almost exactly the same purpose. When this is degenerated, the signal weakens or slows.

Depending on the nerve(s) affected, this can impact on sensation, motor control, balance, vision etc etc. The version of MS that I've been diagnosed with is secondary remitting - I have periods of attacks or relapses, followed by quiet periods where little to no disease activity is shown.

My first attack was mid 2006, although at te time I didn't seek help. It was only after an interview with the neurologist and examination of the MRI (think detailed brain scan showing areas of current damage and scarring) that I realised that it was an MS attack. My right eye went noticeably blurry over the course of an afternoon and slowly recovered over a few days.

About a month ago my right leg and right hand side torse lost about 75% of its sensation, going extremely numb in places having no feeling at all. I was thankfully not affected mobility-wise! This was my first major attack and accounts for 90% of the 20-something lesions (myelin decay scarring) found on my MRI across the brain, the numbness caused by a couple of large-ish lesions in my spine near the join of neck and back. My wife dragged me into hospital for treatment and diagnosis.

Following on from that I've had a lot more "typical" MS symptoms for someone who is recovering from an attack. Lots of tiredness, I now sleep for 12+ hours a day and sometimes need rests at work to maintain productivity. Fortunately I'm a computer programmer so I don't have a lot of issues with energy conservation yet, and my employer is a family friend so very sympathetic.

I used to walk 9 holes at golf - now I'm buggered and losing strength after 9 holes in a buggy :( Concentration and learning is down. I'm told this should fade which will be good.

So I've had nothing for a little over a month that would be considered an attack, and slowly everything is getting back to "normal". I'm rebuilding stamina and looking into a slow-build fitness program (remember, no serious bodily stress!) to lift my general health and well-being. A healthy diet is now my norm and processed / fatty food is definetly out. I wasn't a great big fatty (swinging between 85-90kg with large frame / shoulders at about 6 feet tall) but I'm going to be a lot more fit.

Beer, my old friend beer, good old beer!, is now a very rare, casual companion. Oh how I miss you beer :( Luckily I stopped smoking 10 years ago so I don't have to go through THAT.

Things are OK, but will be a bit different. I want to hit it head on and get maximum result which means positive attitude and some changes. Its kind of "dark funny" when one of the best things you can really say to look on the bright side is "at least it doesn't kill ya" but its true.