hows this sound hoggy?
http://www.gizmag.com/ccsvi-multiple-sclerosis-ms-cure-zamboni/13447/

I really hope that this turns out too be true, would be a giant leap forward for MS

Interesting!

Man, no coffee yet today - it took me four attempts to spell intertetstyfgingcan'tbearsedfixingitthistime.

That is a pretty amazing story! Fingers crossed anyway. Interesting that this actually addresses the blood-brain barrier mystery which is a core problem for researchers. How do the naughty immune cells cross the BBB to attack the nerves?

The best bit is that the vein blockage appears to be visible, so its probably treatable in its own right if the patient is keen.

I get a bit FaceMan concerned about cures that cut out the drug companies. There is a lot of money in ABCR drug treatments for MS - I currently drain the system of about 20-25k per annum total, of which 17k is my ongoing drugs.

Looks like I'm stepping up to a new more powerful treatment this year that could double that cost...

last edited by Hogfather at 10:22:03 12/Dec/09

Hey Hog, are the treatments tax deductible?

The treatments are covered by PBS - so cost us out of pocket about 50 bucks a month.

Another important observation made by Zamboni's team is that the pattern of reflux, that is, the specific pathway the blood uses to flow back to the brain, showed a strong correlation to the type of MS. Persons with PPMS had a different reflux pattern that those with RRMS and SPMS. Furthermore, the PPMS reflux pattern provided a good explanation why this form of MS is more aggressive and problematic.

Source: http://csvi-ms.net/en/content/ccsvi-huge-breakthrough-ms

Holy f*** ... if that's true then this s*** might be for real. As far as I know they've never clinically separated PPMS from RRMS aside from observation of symptoms!

last edited by Hogfather at 10:26:56 12/Dec/09

I couldnt beleive it the first time I saw the full price on the MS medication, over a 1000k a month, its good the government covers it or no one would be able to get it. The Pharmacy companys must be making a f***en mint out of the stuff.

Hey Hog, are the treatments tax deductible?

On top of PBS, all medical expenses over $1500 per year you can claim 20% back in your tax return.

PBS Safety Net is probably going to keep most people under 1500.

Hogfather - gee that would be nice.

there's a consipiracy here somewhere

over a 1000k a month,

Did you mean 1000 a month? 1000k would be 1000000 and that's a pretty damn large amount per month

Stem cell treatment has been reported to show some signs of success also!

I love science!
Didn't know you had MS Hoggy, but best of luck buddy, looks promising.

Once the immune cells have direct access to the immune system

...

Im pretty sure that the BBB breaks down in inflammation and immune cells can cross it man.

last edited by Jimbo at 10:45:31 16/Dec/09

Im pretty sure that the BBB breaks down in inflammation and immune cells can cross it man.

The cause of inflammation in M.S. is not well understood - which is what I was getting at in the 'BBB mystery'. Those naughty T-Cells just shouldn't be in there, and an immune response to myelin shouldn't be formulated.

What is known is that the BBB is broken at some point during an episode as T-Cells and other immune agents gain access to the nervous system.

Venous pressure presents a rather neat explanation as the destruction of blood vessels would invoke an immune response (inflammation) as well as result in the opportunity for immune agents to cross the BBB and gain access to the Cerebral-Spinal Fluid.

Which type of MS you have Hog? And what is an 'attack' that they talk about in the article? A seizure?

RRMS - relapsing remitting. The relapsing bit is the attack, the remitting bit is the time between.

An attack is where the myelin coating on the nerves is being destroyed and things start to go wrong. In between I have remission where the myelin imperfectly repairs, forming scars that are visible on an MRI - sclerosis means scar. Multiple Sclerosis is defined as multiple scars or lesions appearing in different places at different times.

Once or twice a year where I can lose vision, strength, dexterity, motor skills. For some reason hearing is almost never involved. Fortunately bowels and bladder are rarely affected and usually in advanced cases. I'm not sure if I could handle losing control of mah s***.

Usually these attacks involve a hospital stay for 3-5 days and a course of intravenous steroids to assist the repair of myelin. Last attack I was on crutches for a month and couldn't hold a cup of coffee in my left hand.

The fortunate thing about RRMS is the remitting bit. After an attack I tend to recover well - the neuro reckons I get 95% or more back in the following weeks and months. Its a really s***ty time though and its easy to get very impatient.

I reckon if you installed a QGL Hogfather Rage Meter and plotted the results against level of M.S. impairment you'd see a statistical correspondence :)

The remission isn't perfect. Day to day I have varying levels of trouble, from nothing at all (literally I feel like f***ing Superman and can run up flights of stairs) to not wanting to leave the house because I'm exhausted and feel like a gimp. Its really hard to push myself to work those days, but the responsibility of being a Dad and primary provider to my team is a massive kick in the arse.

After a day at the beach you can guarantee that I'll need a Bex and a lie down. Heat does wacky things to M.S., can cause a 'mini relapse' where previous symptoms reprise. I think that core temperature interferes with myelin scar tissue.

I can't really drink anymore, as it seems to compound with the M.S. to make me seem blotto after a few beers. This is funny for other people though, but gets annoying if we go out on the town and I'm refused service after 3 mid-strength beers cos I have a wobble on. Obviously I never, ever drink and drive, I'm self-enforced 0.00 BAC.

That may be tl;dr, but I like talking about it and explaining it.

last edited by Hogfather at 11:43:41 16/Dec/09

despite my arrogance and whatever else you might think of me, I actually do hope it works out for you hoggy
at the end of the day human suffering (diesease/famine etc) should be our #1 fight imo

No good. Well, hopefully there is something in this research for you. What's good is that he's not using any new methods, so if the research can be validated by other parties then it would be almost instantaneously implemented.

Good mate of mine has a really annoying affliction: tinnitus. One sound in one ear is 50dB which is pretty loud. He has to sleep with a radio tuned to no station (white noise). On the other hand, he's an engineer with a very solid background in vibration (but nothing neuro-) so he has quantified precisely the frequencies that he hears and he does his own little tests on himself. It's quite interesting, but f*** having it.

Well, since this is a cheery thread I'm looking forward to diabetes, heart failure and glaucoma - all hereditary and all rife in my family on both sides. Bring it on. Three out of four of my grandparents had triple bypass surgery - and all were skinny, basically underweight! No fat people in my family.

despite my arrogance and whatever else you might think of me, I actually do hope it works out for you hoggy

Thanks dude!

Actually, I reckon you're a good guy! QGL != reality, I have no doubt that if we met IRL we'd get along, and include almost all of QGL in that. I'd crack a beer with any of you d*******s. We don't agree on some things but this is normal!

Enough of the care bear s***. Don't you have someone to run over?!

About stem cells, here's another article:

http://www.abc.net.au/news/stories/2009/12/14/2770629.htm

This is a f***ing hardcore treatment though. They extracted stem cells from the patient's bone marrow, completely destroyed his immune system and then re injected the stem cells. This would have rebooted the immune system.

1% chance of death .. ouch!

last edited by Hogfather at 12:10:38 16/Dec/09

I'd run over some pregnant cab drivers to collect the stems cells for you anyday <3

I have a liver condition that will probably see me needing a new one in the next decade or so, I'm clinging on to the hope that by then, they'll have decreased the risk from 10% chance of death to somewhere like .01%

^
What s***s me about that is that we have more than enough usable 2nd hand livers and organs in the system to meet demand and they are allowed to rot because people are jerks. Religion is probably to blame.

f*** that s***, they should just take the internal organs on the sly and give the family back a stuffed cadaver. Who the f*** looks inside anyway.

my brother is a donor match for me, luckily enough
but theres still a 5% risk of death for him and 10%~ for me

I would gladly give blood/donate organs but they won't let me, for obvious reasons

f*** that s***, they should just take the internal organs on the sly and give the family back a stuffed cadaver. Who the f*** looks inside anyway.

f***in aye

reckon, people who arent organ doners should die in fires

or in a bath tub full of ice

haha

My kidney's nobody's kidney but mine. You've got you're own [f***ed] kidney, let me have mine. *sing*

Nah, there's still massive holes in the organ donation process. It's not enough to tick a box on your driver's license - it doesn't legally mean anything. Main thing to do is let your mates and loved ones know that you want to donate your organs.

Excellent article:

In my opinion any concept of property in the human body either during life or after death is biologically inaccurate and morally wrong. The body should be regarded as on loan to the individual from the biomass, to which the cadaver will inevitably return. Development of immunosuppressive drugs has resulted in the cadaver becoming a unique and invaluable resource to those who will benefit from organ donation.

Journal of Medical Ethics

why do people give a f*** if they are burried or burned missing an organ? apart from the religious bulls***

you're f***ing dead... what can't you do with it that you can't do without it?

f***ing hate Medical Ethics, biggest bunch of pontificating f***wits they say absolutely nothing in many many words

but agree with organ donations, theres no reason good bits should go to waste. Better yet and less barbaric would be remade organs, or new organs from stem cells, but theyre a while off yet thanks to f***ing ethics

it's all just selfishness really, if you found someone that didn't want to donate their organs because of relgious beliefs or whatever
then you tell them that their son/daughter needs a kidney or part of their liver, I guarantee they'd do it
they just don't want to do it for some stranger

f*** if I care what happens to any part of me when I die, except my schlong
that s*** needs to go on display

Nah, there's still massive holes in the organ donation process. It's not enough to tick a box on your driver's license - it doesn't legally mean anything. Main thing to do is let your mates and loved ones know that you want to donate your organs.

I will donate my organs in the result of death. Carve that s*** up, I say.....

My kidney's nobody's kidney but mine. You've got you're own [f***ed] kidney, let me have mine. *sing*

Nah, there's still massive holes in the organ donation process. It's not enough to tick a box on your driver's license - it doesn't legally mean anything. Main thing to do is let your mates and loved ones know that you want to donate your organs.

Everyone should definitely register for the Australian Organ Donor Register:

http://www.medicareaustralia.gov.au/public/services/aodr/register.jsp

They will send you a card which you keep in your wallet. DO IT! It takes a few minutes, it's free, and the life you save may be mine!

I am a donor, the gift of life is the ultimate gift anyone can give.

If you are not a donor you are selfish.

Apparently I've already registered, but this is comical anyway.

Successful!

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address.
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reset password via snail mail

dear god

We should really have default organ donation and an opt-out if you want policy. That's been shown to dramastically improve donation rates.

^
Yes

We should really have default organ donation and an opt-out if you want policy. That's been shown to dramastically improve donation rates.

+1

I think they do this in some scandinavian countries.

Big success

wtf, i was gonna poast my drivers licence says carve me up, but i coudlnt find where it did.

i ticked the box when i got my licence .. . . .

yeah didn't it used to say on there years ago?

It did indeed, mine also has a distinct lack of donor information
do what trog says anyway, my family is also very well aware of my intentions to be an organ donor

(I can't donate blood or certain organs, but some stuff is up for grabs)

wtf, i was gonna poast my drivers licence says carve me up, but i coudlnt find where it did.

i ticked the box when i got my licence .. . . .

IIRC, drivers license is no longer enough to be sure your organs will be used appropriately. You need to be on the national register, which is the only "official" register.

f***ing hell dave it is bitching about my home address as per my medicare details, arrgh!!

IIRC, drivers license is no longer enough to be sure your organs will be used appropriately. You need to be on the national register, which is the only "official" register.

Still doesn't matter. It comes down to your family's wishes. If you are keen to donate your organs then:
1. Register
2. Tell all your friends and family that you want to be an organ donor

If you f*** up No. 2 and your mum doesn't want to give your liver away after you crash your Honda Fireblade then your organs will go to the crematorium with you.

Paging non-christian religion people here. Also non-Aussie backgrounds.
My mate is of Macedonian-decent and his family won't let him donate his organs. Another mate is Lebanese, but Christian and she can do whatever she wants (she chooses to donate).
/Agree with opt-out of organ donation policy - f*** lazy selfish people.

registered. thanks for the up

Registered - thanks for the ups

registered - thanks for the ups:

i have donated everything except my pancreas

IM TAKING THAT WITH ME

Yep just registered myself for organ donation...... Hope they dont get my stuff for a while yet.

wtf!?
now hoggy gets to get high legit

but he's in qld?

but he's in qld?

As if you needed another reason to come to VIC (amirite konstie, Khel, TicMan, Raven?), but POW! There it is.

seriously, abolish poison is the best way to cure certain class' (of) ms

last edited by casa at 09:43:00 15/Jan/10

Spook, its an extract.

He wants to be able to prescribe Sativex, a drug developed in the UK by GW Pharmaceuticals, a company established specifically to develop cannabis-based prescription medicines.

According to the company's website there is no evidence that patients obtain a high such as those experienced by marijuana smokers.

The most common side-effects of Sativex are sleepiness, nausea, and dizziness.

That sounds like fun :p

Semi-relevant joke from front-page of Sickipedia:

I got stoned after rolling a joint in a mosque.