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(People Magazine)   Two weeks after becoming a father, Jack Osbourne diagnosed with Multiple Sclerosis   (people.com) divider line 100
    More: Sad, Jack Osbourne  
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7450 clicks; posted to Entertainment » on 18 Jun 2012 at 6:52 AM (1 year ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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2012-06-18 01:03:50 AM
MS sucks, and not to diminish his illness, but he could go for years without having any noticable, diminished capacity. I used to work with a guy who had MS (also diagnosed pretty young) and with the exception of a few bad headaches a year, you'd never know.

Of course short of there being a cure in the next 10-20 years he will start to have problems by then.

But yah, MS sucks. I remember reading an essay from a guy who's wife has it and how frustrated he was that "we've cured MS in mice a dozen times over, but no cure for humans".
 
2012-06-18 01:08:22 AM
I had a friend who had it and wound up swallowing a gun when she couldn't take it anymore. Terrible disease.
 
2012-06-18 01:15:22 AM
Man, he's only 26, that is sad. Annette Funicello has had it for some time (Wikipedia said she announced it in 1992, and by then had kept it a secret for many years). That was 20 years ago and she was 50 then.

So, yeah, maybe he can manage it for quite a while. If nothing else, I just connected Jack Osbourne and Annette Funicello for the first time in my life.
 
2012-06-18 02:05:25 AM
who?
 
2012-06-18 06:54:09 AM
I guess some people just don't have the nerve for fatherhood.
 
2012-06-18 07:03:30 AM
One sclerosis is bad enough.
 
2012-06-18 07:16:21 AM
This is a lesson for us all: wipe down the toilet seat before you use it. They don't put the seat covers up so you can one around your neck like a goofy necklace- protect yourself and wrap it up.
 
2012-06-18 07:28:51 AM
He's rich so I'm sure he'll be fine
 
2012-06-18 07:31:41 AM
That's too bad. Life often happens even when you don't have a reality TV series.
 
2012-06-18 07:32:30 AM

foo monkey: One sclerosis is bad enough.


You are a terrible person.

/I lol'd
 
2012-06-18 07:41:27 AM

foo monkey: One sclerosis is bad enough.


How dare you make me snort coffee laughing about this disease! Enjoy your free month lmao
 
2012-06-18 07:44:10 AM
Tell him to chomp some bat heads & get back to us.

/worked for Dad.....
 
2012-06-18 08:01:37 AM
All that I can think of is Ozzy trying to pronounce the diagnosis.
 
2012-06-18 08:08:41 AM
i'll save my sympathy for someone who cannot afford the finest medical care and assistance money can buy.
 
2012-06-18 08:11:54 AM
I am Jack's complete lack of myelin.
 
2012-06-18 08:12:05 AM
www.mixedreviews.net

RIP NORMAN OSBOURNE

//am I doing it right?
 
2012-06-18 08:12:45 AM
My cousin has it - she's exactly four months younger than me. She was diagnosed about thirty years ago and unfortunately she didn't have much of a remission phrase. She's been in a wheelchair for well over twenty years and hasn't been able to feed herself for years. Horrible disease.
 
2012-06-18 08:21:29 AM
Happy Father's Day?

/too soon?
 
2012-06-18 08:21:30 AM
That's bad. And now I feel bad for him. That is all.
 
2012-06-18 08:29:12 AM
Michael J. Fox wants to know what's shakin'?

/yes, knows Fox has Parkinson's
//yes, going to hell in a hot rod
 
2012-06-18 08:33:36 AM
First, let me state for the record that MS is indeed a dreadful disease that I wouldn't wish on anyone. I wish Jack all the best in dealing with it.

That said, is anyone really surprised that Ozzy's offspring have problematic genetic mutations?
 
2012-06-18 08:34:05 AM
 
2012-06-18 08:36:33 AM

2xhelix: I had a friend who had it and wound up swallowing a gun when she couldn't take it anymore. Terrible disease.


My mom has had MS for about 15 years and I'm afraid she is getting to that point. She'll be fine one day and then she gets the slightest bit sick and she's down for two or three weeks at a time. I remember when she had her first major debacle which put her in bed for about 4 months. She always talks of how tired of it all she is. That's what worries me. That and the ready access to guns in her house.
 
2012-06-18 08:36:43 AM
My aunt has this it's a terrible disease. She was diagnosed with it when she was 26 (50 something now) ironically 2 months before she graduated law school.

She always needs a walker unless she's having a bad episode then she's in a wheelchair.
 
2012-06-18 08:42:06 AM

Sugarmoobs: 2xhelix: I had a friend who had it and wound up swallowing a gun when she couldn't take it anymore. Terrible disease.

My mom has had MS for about 15 years and I'm afraid she is getting to that point. She'll be fine one day and then she gets the slightest bit sick and she's down for two or three weeks at a time. I remember when she had her first major debacle which put her in bed for about 4 months. She always talks of how tired of it all she is. That's what worries me. That and the ready access to guns in her house.


Does she need the guns? I'd think about having a chat with her and saying..you understand how tired and painful it is, but ultimately you'd feel more relieved to know that you don't stand a chance of coming home to find her brains on the other side of the bed.

Everyone has a right to die, but having experienced my fathers suicide by hanging..I can't even imagine the amount of pain & trauma discovering your mum with a self inflicted gunshot wound would be like.
 
2012-06-18 08:45:05 AM
www.fayette.k12.il.us

RIP MS Paint
 
2012-06-18 08:45:50 AM

foo monkey: One sclerosis is bad enough.


Came here to say that!
 
2012-06-18 08:49:13 AM
who?
 
2012-06-18 08:54:40 AM
Fark MS. Seriously.
 
2012-06-18 08:54:40 AM

KrispyKritter: i'll save my sympathy for someone who cannot afford the finest medical care and assistance money can buy.


Yes. Rich people don't deserve sympathy when something bad happens to them.

Douchebag.
 
2012-06-18 08:57:00 AM

KrispyKritter: i'll save my sympathy for someone who cannot afford the finest medical care and assistance money can buy.


What's the matter with you? Really.
 
2012-06-18 08:57:16 AM

Coffee Snob: KrispyKritter: i'll save my sympathy for someone who cannot afford the finest medical care and assistance money can buy.

Yes. Rich people don't deserve sympathy when something bad happens to them.

Douchebag.


It is hard for me to believe that someone actually feels that way. Depressing.
 
2012-06-18 08:57:38 AM
Well, crap.

Now who is Ozzy going to call when he can't work his TV remote?
 
2012-06-18 08:59:27 AM

Spaced Lion: Well, crap.

Now who is Ozzy going to call when he can't work his TV remote?


Sharon?
 
2012-06-18 08:59:34 AM
Well, my wife has it, it's been a good 15 years since she's had it diagnosed.

So we live with it everyday. From the injections that make her sick as hell but helps prevents high points and lesions, with the latest pills being recalled (and the doctor calling us to say to stop taking it right away) after 15 deaths that appear to be associated with them.

From her partly losing her sight (it does return but it's diminishing year by year), to having to use a cane and a walker, to just falling asleep in the middle of drinking her coffee, to being unable to move very well due to the pain.

But she's the most incredible woman I've ever known despised her ailments and being a pain in my arse (in a good way), which is why I married her.

We hope for news everyday that progress has been done to control this as much as possible, and of course for a cure too, but we are being realistic.
 
2012-06-18 09:11:36 AM

imfallen_angel: Well, my wife has it, it's been a good 15 years since she's had it diagnosed.

So we live with it everyday. From the injections that make her sick as hell but helps prevents high points and lesions, with the latest pills being recalled (and the doctor calling us to say to stop taking it right away) after 15 deaths that appear to be associated with them.

From her partly losing her sight (it does return but it's diminishing year by year), to having to use a cane and a walker, to just falling asleep in the middle of drinking her coffee, to being unable to move very well due to the pain.

But she's the most incredible woman I've ever known despised her ailments and being a pain in my arse (in a good way), which is why I married her.

We hope for news everyday that progress has been done to control this as much as possible, and of course for a cure too, but we are being realistic.


This story makes me feel really sad. :(
 
2012-06-18 09:12:58 AM

imfallen_angel: Well, my wife has it, it's been a good 15 years since she's had it diagnosed.

So we live with it everyday. From the injections that make her sick as hell but helps prevents high points and lesions, with the latest pills being recalled (and the doctor calling us to say to stop taking it right away) after 15 deaths that appear to be associated with them.



What now? Gileyna? I know it's been hitting people with off-beat hearts a bit hard but it's not been recalled.

I've been on it a year, and during the day-long first dose monitoring session I didn't even flutter.

Was on Avonex, and I'll be damned if I'm going back.

Diagnosed for 9 years, and I've known I've had an issue for about 12. Walked it off the first 3 years. :/
 
2012-06-18 09:15:54 AM

Tat'dGreaser: He's rich so I'm sure he'll be fine


Yeah, Richard Pryor died by just barely losing a wrestling match to a tiger at 75.

Douchebag.
 
2012-06-18 09:20:03 AM

Mugato: Yeah, Richard Pryor died by just barely losing a wrestling match to a tiger at 75.

Douchebag.


Oh God, lighten up Francis
 
2012-06-18 09:22:10 AM
While I don't wish the disease on anyone, it's hard for me to feel sorry for Jack Osborne. Matbe it was the editing, but what i did see of him on the 8 episodes of the osbornes that I watched, made him out to be a petulant spoiled brat and I'm not going to jump on the love fest train because he got sick.
 
2012-06-18 09:23:56 AM

Mugato: Tat'dGreaser: He's rich so I'm sure he'll be fine

Yeah, Richard Pryor died by just barely losing a wrestling match to a tiger at 75.

Douchebag.


Totally random, but farking Montel Williams (has MS) pisses me off. He's on TV pushing those payday loans or whatever.

I kinda feel like he needs to be kicked out of the MS club.

In other news, not to quibble, but yea, he'll be much better off if he's rich. Look at Ann Romney. She gets to treat her MS with horseriding and woo-woo homeopathic crystals or whatever.

I'd certainly feel better with a few mil' in the bank.
 
2012-06-18 09:23:56 AM

mark.jms: What now? Gileyna? I know it's been hitting people with off-beat hearts a bit hard but it's not been recalled.

I've been on it a year, and during the day-long first dose monitoring session I didn't even flutter.


Yeah. FDA issued some new guidance on it. When they were looking at putting me on it, it was a six-hour ECG, and retina checks quarterly. But I guess some dude who'd previously had heart trouble died after he'd successfully completed his monitoring. :-/

That, combined with an insurance company rejection, changed my neuro's Rx. :-/

mark.jms: Was on Avonex, and I'll be damned if I'm going back.


I'm on Rebif, which is the same drug, just administered differently. I'm hating it.

mark.jms: Diagnosed for 9 years, and I've known I've had an issue for about 12. Walked it off the first 3 years. :/


I'd had various symptoms since I was a preteen. I can remember the foot numbness/burning going back to about age 12. As a teenager, it was always, "we think you've got mono." (Which shocked me, considering how little action I got back then....) Then when the blood tests came back, wasn't mono, and I was better. By the time they finally figured out what it was, I was in my 30s.
 
2012-06-18 09:25:20 AM

jaybeezey: While I don't wish the disease on anyone, it's hard for me to feel sorry for Jack Osborne. Matbe it was the editing, but what i did see of him on the 8 episodes of the osbornes that I watched, made him out to be a petulant spoiled brat and I'm not going to jump on the love fest train because he got sick.


Wasnt he 17 when that show was released? He seems to have grown up since then.
 
2012-06-18 09:33:27 AM

hurdboy: mark.jms: What now? Gileyna? I know it's been hitting people with off-beat hearts a bit hard but it's not been recalled.
I've been on it a year, and during the day-long first dose monitoring session I didn't even flutter.

That, combined with an insurance company rejection, changed my neuro's Rx. :-/


Ah, there's the crux of the matter. Which company?


I'm on Rebif, which is the same drug, just administered differently. I'm hating it.


Ug, yeah. "Here's the same shiat more often!"


I'd had various symptoms since I was a preteen. I can remember the foot numbness/burning going back to about age 12.


Interesting. My dad had a brief spurt of numbness over his entire body at 19 or 20, in the best shape of his life (putzing around Okinawa after getting shot in Vietnam) - I don't recall the exact Army diagnosis at the time, but now we're pretty sure it's MS, he's lost control of his left leg, etc, in the last 15 years or so. He's been completely untreated, however, so, I'm hoping that myself being on treatment will keep be at a baseline above his when I'm his age.
 
2012-06-18 09:41:08 AM

Ooba Tooba: All that I can think of is Ozzy trying to pronounce the diagnosis.


As some one who lost a parent to MS and had been living with a minor form of the disease for most of my adult life, let me say- That was freakin' hilarious.
Well played.
 
2012-06-18 09:43:46 AM

mark.jms: Ah, there's the crux of the matter. Which company?


I'd prefer not to say, actually. Remember that whole If-you-like-your-plan-you'll-be-able-to-keep-it thing with eh PP&ACA? Yeah, about that......grrrrrr....

//Single-payer insurance, pls.

mark.jms: Interesting. My dad had a brief spurt of numbness over his entire body at 19 or 20, in the best shape of his life (putzing around Okinawa after getting shot in Vietnam) - I don't recall the exact Army diagnosis at the time, but now we're pretty sure it's MS, he's lost control of his left leg, etc, in the last 15 years or so. He's been completely untreated, however, so, I'm hoping that myself being on treatment will keep be at a baseline above his when I'm his age.


Oh, the full-body numbness was a lot later. When I was finally diagnosed, I was working through unexplained vision problems. My apartment got screwed up during a storm. After the plaster/paint finally got fixed, I just didn't have the energy to move things back into the bedrooms. Then at about 4:45 one morning, I woke up with a bout of vertigo. (It's weird waking up because you're dizzy....) I was able to reposition, and fall back asleep. When I woke up for the day an hour later, I was numb from about mid-chest down. When I told my (then) fiancee about it, she made me go to the doctor, "to the emergency room...like right now!" I went to the urgent care clinic (doc-in-a-box), who ran all sorts of test (including UFIA *sigh*), then sent me to a neurologist. After a cruise in the MRI tube, yeah, you've got it. (though she was pretty sure before the MRI...)
 
2012-06-18 09:48:22 AM
...ooh the McRib is back!
 
2012-06-18 09:50:50 AM

mark.jms:
What now? Gileyna? I know it's been hitting people with off-beat hearts a bit hard but it's not been recalled.

I've been on it a year, and during the day-long first dose monitoring session I didn't even flutter.

Was on Avonex, and I'll be damned if I'm going back.

Diagnosed for 9 years, and I've known I've had an issue for about 12. Walked it off the first 3 years. :/


Yup, they recalled it, but I see that they've returned it but require intensive heart checks.

And it was 11 deaths associated with it. So I wouldn't say "a bit hard", especially when my wife does have multiple ailment and her heart is at risk.

As stated, MS has a fairly large spectrum from simple and minor ailments to death, as you sound to be in the lower end and if you were able to walk it off, you are one of the "lucky" ones and I'm happy for you that it's working for you.

And she is back on Avonex, which is a serious pain, but between the flu like reaction as opposed to the possibilities... it's not much of a choice.

hurdboy: But I guess some dude who'd previously had heart trouble died after he'd successfully completed his monitoring. :-/


As stated, it was 11 death, not just a freak accident.

My wife was also tried on Tisabri, and that didn't work out either... and now the reports for that are also really bad with multiple death and infections. But that one scared me from the very beginning.
 
2012-06-18 09:51:36 AM
I've been diagnosed with MS for 5 years now.

Honestly, Tysabri has been a godsend. Copaxone, Betaserone, Rebif...they did nothing. I've been on Tysabri for two years and it has done wonders. I have the usual fatigue (Adderall XR helps that) and I react poorly to the heat, but I have had no relapses since starting the Tysabri.
 
2012-06-18 09:52:57 AM

imfallen_angel: mark.jms:
What now? Gileyna? I know it's been hitting people with off-beat hearts a bit hard but it's not been recalled.

I've been on it a year, and during the day-long first dose monitoring session I didn't even flutter.

Was on Avonex, and I'll be damned if I'm going back.

Diagnosed for 9 years, and I've known I've had an issue for about 12. Walked it off the first 3 years. :/

Yup, they recalled it, but I see that they've returned it but require intensive heart checks.

And it was 11 deaths associated with it. So I wouldn't say "a bit hard", especially when my wife does have multiple ailment and her heart is at risk.

As stated, MS has a fairly large spectrum from simple and minor ailments to death, as you sound to be in the lower end and if you were able to walk it off, you are one of the "lucky" ones and I'm happy for you that it's working for you.

And she is back on Avonex, which is a serious pain, but between the flu like reaction as opposed to the possibilities... it's not much of a choice.

hurdboy: But I guess some dude who'd previously had heart trouble died after he'd successfully completed his monitoring. :-/

As stated, it was 11 death, not just a freak accident.

My wife was also tried on Tisabri, and that didn't work out either... and now the reports for that are also really bad with multiple death and infections. But that one scared me from the very beginning.


Is anyone still using Copaxone? (I was in the original clinical trials)
 
2012-06-18 09:55:31 AM

imfallen_angel: My wife was also tried on Tisabri, and that didn't work out either... and now the reports for that are also really bad with multiple death and infections. But that one scared me from the very beginning.


Tysabri deaths were largely due to people who'd had the JC virus. (doesn't stand for Jesus Christ, AFAIK.....) They now test for that before prescribing. My neuro wanted me to go on that, but I don't take getting veins hit well. I could never be a heroin addict.
 
2012-06-18 09:55:38 AM

part of the problem: imfallen_angel: mark.jms:
What now? Gileyna? I know it's been hitting people with off-beat hearts a bit hard but it's not been recalled.

I've been on it a year, and during the day-long first dose monitoring session I didn't even flutter.

Was on Avonex, and I'll be damned if I'm going back.

Diagnosed for 9 years, and I've known I've had an issue for about 12. Walked it off the first 3 years. :/

Yup, they recalled it, but I see that they've returned it but require intensive heart checks.

And it was 11 deaths associated with it. So I wouldn't say "a bit hard", especially when my wife does have multiple ailment and her heart is at risk.

As stated, MS has a fairly large spectrum from simple and minor ailments to death, as you sound to be in the lower end and if you were able to walk it off, you are one of the "lucky" ones and I'm happy for you that it's working for you.

And she is back on Avonex, which is a serious pain, but between the flu like reaction as opposed to the possibilities... it's not much of a choice.

hurdboy: But I guess some dude who'd previously had heart trouble died after he'd successfully completed his monitoring. :-/

As stated, it was 11 death, not just a freak accident.

My wife was also tried on Tisabri, and that didn't work out either... and now the reports for that are also really bad with multiple death and infections. But that one scared me from the very beginning.

Is anyone still using Copaxone? (I was in the original clinical trials)


I think doctor's start most of the newly diagnosed on Copaxone. They see if it does anything, and then move you to something stronger if it does not work.
 
2012-06-18 09:55:47 AM

hurdboy:
//Single-payer insurance, pls.


Yea, no shiat. All those assholes going on about economic ramifications don't understand how it ruins the fluidity of the job market when you're either forced to stay or too scared to move from a job where you're properly covered and/or won't get fired at the drop of a hat. And that's the healthy person's problem, ours is much worse.

It's like they still think we can trade chickens for modern medical care.


Oh, the full-body numbness was a lot later. When I was finally diagnosed, I was working through unexplained vision problems.


Hm. I had a vision thing first too. Actually, I slept for about 3 weeks except for going to work, and when I was awake I was basically viewing the world as if my eyes were crossed. In a smaller town at the time, eye doc gave me these crazy lenses, but it eventually went away on it's own.

Driving at night going home during the winter was...interesting. I had to cover an eye with a hand to see WTF was going on, and I left it to Fate if I was driving in rain or snow.

Was single at the time though. My second burst was a bit of loss of control of my left leg, which I 'walked off' after a couple months. The diagnosing event was my left hand cramping solid, still have pain in the joints of my thumb, like it's arthritic.


These monthly MS threads are so fun. I can't wait to get cancer or something and participate in those.
 
2012-06-18 09:58:07 AM

namatad: who?


Joan Osborne's (who sang Mother Mother) Son.
 
2012-06-18 10:01:29 AM
Well, my wife has it, it's been a good 15 years since she's had it diagnosed.

So we live with it everyday. From the injections that make her sick as hell but helps prevents high points and lesions, with the latest pills being recalled (and the doctor calling us to say to stop taking it right away) after 15 deaths that appear to be associated with them.

From her partly losing her sight (it does return but it's diminishing year by year), to having to use a cane and a walker, to just falling asleep in the middle of drinking her coffee, to being unable to move very well due to the pain.

But she's the most incredible woman I've ever known despised her ailments and being a pain in my arse (in a good way), which is why I married her.

We hope for news everyday that progress has been done to control this as much as possible, and of course for a cure too, but we are being realistic.


Thanks for making me cry over my morning coffee.

Cheers to you for being a real man and a real husband. I stand in awe.
 
2012-06-18 10:03:03 AM

mark.jms: hurdboy:
//Single-payer insurance, pls.


Yea, no shiat. All those assholes going on about economic ramifications don't understand how it ruins the fluidity of the job market when you're either forced to stay or too scared to move from a job where you're properly covered and/or won't get fired at the drop of a hat. And that's the healthy person's problem, ours is much worse.

It's like they still think we can trade chickens for modern medical care.


Watched an amusing debate between a couple of Youtubers last week on this subject. One of them is a hardcore Libertarian who advocates getting rid of insurance completely and letting people choose to see whatever doctors they feel can provide the best service(the invisible hand of the Free Market, etc). Considering I know a family in Texas who almost lost their house when their son was diagnosed with a rare form of leukemia that idea didn't sit well with me.
 
2012-06-18 10:04:00 AM

mark.jms: Yea, no shiat. All those assholes going on about economic ramifications don't understand how it ruins the fluidity of the job market when you're either forced to stay or too scared to move from a job where you're properly covered and/or won't get fired at the drop of a hat. And that's the healthy person's problem, ours is much worse.

It's like they still think we can trade chickens for modern medical care.


I'd come to that realization long before I knew I was sick, much because of what you're saying. Did I ever turn down a job because of the health insurance? No. Did I ever end up in a job with shiatty insurance? You bet. Did I ever have employers who just didn't pay the premiums? That, too.

mark.jms: Hm. I had a vision thing first too. Actually, I slept for about 3 weeks except for going to work, and when I was awake I was basically viewing the world as if my eyes were crossed. In a smaller town at the time, eye doc gave me these crazy lenses, but it eventually went away on it's own.

Driving at night going home during the winter was...interesting. I had to cover an eye with a hand to see WTF was going on, and I left it to Fate if I was driving in rain or snow.


Yeah. I haven't driven at night in a long time. I can remember a trip shortly before diagnosis, where I thought a car on a divided high way was coming at me on the wrong side of the highway......

mark.jms: I can't wait to get cancer or something and participate in those.


Check WebMD. You probably do have it. May take you a little while to get to that, but you'll get there.
 
2012-06-18 10:14:57 AM
MS sucks. My sister-in-law and stepmother were both diagnosed within a year of each other. So far they are maintaining pretty well, both have relapsing/remitting.

My uncle had MS. He was one of the lucky ones that got to live a pretty full life until it finally got him at 79. The last few years were pretty ugly though.
 
2012-06-18 10:18:28 AM

darch: Thanks for making me cry over my morning coffee.

Cheers to you for being a real man and a real husband. I stand in awe.



Thanks, but I just tend to look at it in the way that even with her MS and other things, after dating women that were "normal", etc. I had never known a woman that could be simple, honest, without games or such, especially considering her previous life, as she was.

I have to admit that I honestly don't know where I'd be today or what I'd do if I hadn't met her, as even with her MS, her fibro and many other ailments that I don't want to get into, she is incredible.

To be blunt about it, when we met, I was a single dad with three kids, one being severely autistic, and she just wanted to be part of my life and be the mother that my kids never had (birth mother is a paranoid schizophrenic that doesn't see them)

So I'd take her, MS and all, and if something was to happen to her... well, you know... no one could ever take her place...
 
2012-06-18 10:23:39 AM

hurdboy:
mark.jms: I can't wait to get cancer or something and participate in those.

Check WebMD. You probably do have it. May take you a little while to get to that, but you'll get there.


*snert* I expect they've found that everyone over a certain age has some at least minuscule amount.

All these tiny cells hell-bent on reproducing themselves and continuing this enormous walking co-dependant petri dish of a creature that's deluded itself into sentience and 'intelligence', wondering at how easily it all goes so wrongly.

Maybe things make sense if you're some sort of galaxy-spanning disembodied multi-dimensional intelligent cloud.
 
2012-06-18 10:25:02 AM

Sebastian: MS sucks. My sister-in-law and stepmother were both diagnosed within a year of each other. So far they are maintaining pretty well, both have relapsing/remitting.

My uncle had MS. He was one of the lucky ones that got to live a pretty full life until it finally got him at 79. The last few years were pretty ugly though.


My brother in-law is in end-stage and it is very hard to watch. he has a hard time swallowing and drools a lot.
 
2012-06-18 10:35:03 AM

Ambivalence: MS sucks, and not to diminish his illness, but he could go for years without having any noticable, diminished capacity. I used to work with a guy who had MS (also diagnosed pretty young) and with the exception of a few bad headaches a year, you'd never know.

Of course short of there being a cure in the next 10-20 years he will start to have problems by then.

But yah, MS sucks. I remember reading an essay from a guy who's wife has it and how frustrated he was that "we've cured MS in mice a dozen times over, but no cure for humans".


One reason is that the mouse models are only sort of equivalent to MS, they aren't a perfect duplicate. Basically they have a very, very similar appearance and general disease course, but we still don't know all of the underlying genetics and molecular biology of MS. That and the different sub-types probably have different genetic components as well.

imfallen_angel: We hope for news everyday that progress has been done to control this as much as possible, and of course for a cure too, but we are being realistic.


The good thing is there has been amazing progress in treatment just in the last 5-10 years. My great aunt has MS and she is in her 70's now, was diagnosed after probably decades of problems and way before anything other than cortisone treatments were available. She's been lucky that her remissions have been frequent and she has remained pretty healthy. Was in a wheelchair a few times during relapses but not permanently.

My GF also has MS, she was diagnosed a few years ago, about a year before I met her. So yeah, I read pretty much everything that I come across. I'm work on human genetic diseases so I do happen to see a lot of the primary research going on. I think there will be some big advances in therapy and treatment in the next 5-10 years as the genetic components get more worked out and we can start identifying genetic markers for sub-types and best treatment options.

part of the problem: Is anyone still using Copaxone? (I was in the original clinical trials)


Yeah here in Canada anyway. It's what my GF is on

imfallen_angel: So I'd take her, MS and all, and if something was to happen to her... well, you know... no one could ever take her place...


I think you're one of my new heroes. Kudos sir, kudos.
 
2012-06-18 10:37:46 AM

Flappyhead:
It's like they still think we can trade chickens for modern medical care.

Watched an amusing debate between a couple of Youtubers last week on this subject. One of them is a hardcore Libertarian who advocates getting rid of insurance completely and letting people choose to see whatever doctors they feel can provide the best service(the invisible hand of the Free Market, etc). Considering I know a family in Texas who almost lost their house when their son was diagnosed with a rare form of leukemia that idea didn't sit well with me.


I see my EOB's from my healthcare company where the doctor charged $125 for the visit, but they paid him like $45 and told him to fark off for the rest, plus the copay I'd already given him. It's like the doctors gamble to see how much they'll get out of any given company, I don't see the elimination of even that fake sort of price controls helping - now - once there's only one middleman, i.e. single payer, then things start normalizing.

I don't know why these folks continue to think a "free market price" for their own lives isn't going to always be set at "all the money you have" when it's anything beyond a stuffy nose. It's completely ignorant of the human condition.
 
2012-06-18 10:45:45 AM

CaptainSpaceJohnny: part of the problem: imfallen_angel: mark.jms:
What now? Gileyna? I know it's been hitting people with off-beat hearts a bit hard but it's not been recalled.

I've been on it a year, and during the day-long first dose monitoring session I didn't even flutter.

Was on Avonex, and I'll be damned if I'm going back.

Diagnosed for 9 years, and I've known I've had an issue for about 12. Walked it off the first 3 years. :/

Yup, they recalled it, but I see that they've returned it but require intensive heart checks.

And it was 11 deaths associated with it. So I wouldn't say "a bit hard", especially when my wife does have multiple ailment and her heart is at risk.

As stated, MS has a fairly large spectrum from simple and minor ailments to death, as you sound to be in the lower end and if you were able to walk it off, you are one of the "lucky" ones and I'm happy for you that it's working for you.

And she is back on Avonex, which is a serious pain, but between the flu like reaction as opposed to the possibilities... it's not much of a choice.

hurdboy: But I guess some dude who'd previously had heart trouble died after he'd successfully completed his monitoring. :-/

As stated, it was 11 death, not just a freak accident.

My wife was also tried on Tisabri, and that didn't work out either... and now the reports for that are also really bad with multiple death and infections. But that one scared me from the very beginning.

Is anyone still using Copaxone? (I was in the original clinical trials)

I think doctor's start most of the newly diagnosed on Copaxone. They see if it does anything, and then move you to something stronger if it does not work.


Yeah my wife was diagnosed a year ago after a bout of optic neuritis that was serious enough to freak her out. She just did a one year MRI and she has no new lesions, so we are so far so good with Copaxone. However she gets really bad itchy welts that last at least 5 days from each injection. And she is one of those people scared of needles so I have to give her all her injections. Neuro is excited about some pill he expects to see available at the end of the year and thinks that she might be better off switching to that. So we'll see. She has a heart murmur, so anything that is at all connected to heart issues is a no-go.
 
2012-06-18 10:55:15 AM
We just lost a family friend to MS a couple months ago. Its a horrible disese, especially how slow it works. I remember as a kid doing the school fundraisers for it. Back then it seemed like it was the disese to cure.
 
2012-06-18 11:00:34 AM

entropic_existence: The good thing is there has been amazing progress in treatment just in the last 5-10 years. My great aunt has MS and she is in her 70's now, was diagnosed after probably decades of problems and way before anything other than cortisone treatments were available. She's been lucky that her remissions have been frequent and she has remained pretty healthy. Was in a wheelchair a few times during relapses but not permanently.

My GF also has MS, she was diagnosed a few years ago, about a year before I met her. So yeah, I read pretty much everything that I come across. I'm work on human genetic diseases so I do happen to see a lot of the primary research going on. I think there will be some big advances in therapy and treatment in the next 5-10 years as the genetic components get more worked out and we can start identifying genetic markers for sub-types and best treatment options.


My wife had a serious relapse last year and needed hospitalization and for the first time since we've been together, was not herself during it, she was unbelievable temperamental and not herself at all... so any news about new treatment is always good. But it's been crazy difficult as the latest things always have pretty dire side effect.

Nice to hear that you've also made the choice to be with someone with MS and hope that she brings you as much in your life as my wife does in mine.

Ad I wish you everything good with your work/studies, glad to hear someone working in the field with positive words.
 
2012-06-18 11:03:15 AM
Presidented a country while having MS:

cuppacafe.com
 
2012-06-18 11:03:59 AM

imfallen_angel: Well, my wife has it, it's been a good 15 years since she's had it diagnosed.

So we live with it everyday. From the injections that make her sick as hell but helps prevents high points and lesions, with the latest pills being recalled (and the doctor calling us to say to stop taking it right away) after 15 deaths that appear to be associated with them.

From her partly losing her sight (it does return but it's diminishing year by year), to having to use a cane and a walker, to just falling asleep in the middle of drinking her coffee, to being unable to move very well due to the pain.

But she's the most incredible woman I've ever known despised her ailments and being a pain in my arse (in a good way), which is why I married her.

We hope for news everyday that progress has been done to control this as much as possible, and of course for a cure too, but we are being realistic.


:(

I'll never give you crap in another Apple thread again.
 
2012-06-18 11:10:35 AM

theurge14: I'll never give you crap in another Apple thread again.


nah, don't worry about it... the Apple threads have degenerated so much in the last years that it makes our old difference in opinion sound pretty friendly by comparison. I don't even bother much unless it's to poke fun or add something constructive when I can.
 
2012-06-18 11:16:44 AM

Gunderson: namatad: who?

Joan Osborne's (who sang Mother Mother) Son.


No that's Glen Danzig
 
2012-06-18 11:20:57 AM
I was diagnosed at 26 with MS, been in a wheelchair 11 years now. It went badly ended up in hospital acute care. I switched to a gluten free vegan diet, that substantially helped with major symptoms- fatigue and heat intolerance. Still have MS and use a chair but doing MUCH better. Personal experience, your results may vary, but the gluten free vegan choice changed my life. Encourage anyone to try a rigid gluten free low saturated fat diet for a month, I did, never looked back.

steve
 
2012-06-18 11:24:07 AM

imfallen_angel: My wife had a serious relapse last year and needed hospitalization and for the first time since we've been together, was not herself during it, she was unbelievable temperamental and not herself at all... so any news about new treatment is always good. But it's been crazy difficult as the latest things always have pretty dire side effect.


Yeah, one of the problems of a disease that has autoimmune components is the way to treat it can be pretty bad in itself, it's why cancer treatments suck so bad.

imfallen_angel: Nice to hear that you've also made the choice to be with someone with MS and hope that she brings you as much in your life as my wife does in mine.


That she does.

imfallen_angel: Ad I wish you everything good with your work/studies, glad to hear someone working in the field with positive words.


I don't do any work on MS myself, I'm on a project for relatively simpler (and much rarer) inherited diseases. But I hope to do some work on MS genomics at some point depending on funding and if I can find interested collaborators.
 
2012-06-18 11:34:00 AM

Steve121: I was diagnosed at 26 with MS, been in a wheelchair 11 years now. It went badly ended up in hospital acute care. I switched to a gluten free vegan diet, that substantially helped with major symptoms- fatigue and heat intolerance. Still have MS and use a chair but doing MUCH better. Personal experience, your results may vary, but the gluten free vegan choice changed my life. Encourage anyone to try a rigid gluten free low saturated fat diet for a month, I did, never looked back.


There is evidence to suggest that some people with neurological disorders such as MS, Parkinson's, and Huntington's have higher levels of tissue transglutaminase, which also has a role in Celiac Disease. A recent paper with 72 MS patients, 126 first-order relatives, and 123 healthy controls showed that about 10% of MS patients (and 32% of their healthy first-order relatives) had indications of CD compared to the general population.

So if it works for you, that is probably why. Reducing the CD symptoms is going to help you be healthier overall. But it is probably only going to have an effect in a limited number of patients beyond what generally having a better diet is likely to do. Still a lot of research being done in that area from what I can see, but hopefully data like that can help guide treatment as those are relatively simple tests to do.
 
2012-06-18 11:34:39 AM

Steve121: I was diagnosed at 26 with MS, been in a wheelchair 11 years now. It went badly ended up in hospital acute care. I switched to a gluten free vegan diet, that substantially helped with major symptoms- fatigue and heat intolerance. Still have MS and use a chair but doing MUCH better. Personal experience, your results may vary, but the gluten free vegan choice changed my life. Encourage anyone to try a rigid gluten free low saturated fat diet for a month, I did, never looked back.

steve


Sounds like your system had issues with animal and other protein, glad to hear that it's working for you.

Both my wife and my daughter (autism), tried several "diets" and none showed any improvement, so it's really very individualistic.
 
2012-06-18 11:36:16 AM
My wife was diagnosed about three weeks ago with MS. Fortunately, she's a giant hypochondriac so we apparently caught it early.

She should be starting Tysabri later this week and is in talks to start on BG 12 later this year....

/ I know CSB
 
2012-06-18 11:41:55 AM

imfallen_angel: theurge14: I'll never give you crap in another Apple thread again.

nah, don't worry about it... the Apple threads have degenerated so much in the last years that it makes our old difference in opinion sound pretty friendly by comparison. I don't even bother much unless it's to poke fun or add something constructive when I can.


This is true, and same.
 
2012-06-18 12:03:58 PM

standardeviation: My wife was diagnosed about three weeks ago with MS. Fortunately, she's a giant hypochondriac so we apparently caught it early.

She should be starting Tysabri later this week and is in talks to start on BG 12 later this year....

/ I know CSB


Good to hear that it was caught early... anything that prevents an attack early on and prevent degeneration is a good thing.

Good luck!
 
2012-06-18 12:09:39 PM
My dad was diagnosed with MS shortly after we were born. I wish I could have known him before then, everyone says he was such a wonderful amazing person. The MS turned him into a bitter angry man and pretty much ruined my household during my childhood. All three of his children are complete disasters due to the strain of having to deal with this piece of shiat disease.

The existence of MS is the reason I either believe there is no god, or if there is one, he's the biggest asshole in the universe.
 
2012-06-18 12:12:48 PM
3.bp.blogspot.com
Hope it runs in the family.
 
2012-06-18 12:21:51 PM
As someone who has MS, I have to say it sucks. But as stated earlier in the thread, it could be years before he becomes really symptomatic. It typically is passed down from the female side of the family, so there is a good chance my 2 boys will will be MS free. (My mom had and died of MS..) I was diagnosed when I was 30, 50 now, and still feeling pretty good (except for the arthritis)
 
2012-06-18 12:38:36 PM

2xhelix: I had a friend who had it and wound up swallowing a gun when she couldn't take it anymore. Terrible disease.


My father-in-law did the same.
 
2012-06-18 01:16:40 PM
A friend of mine got medical pot for having ms.

/he doesn't actually have ms
 
2012-06-18 01:40:58 PM
That sucks. My cousin had it but it went away. Hopefully it's a case like that.
 
2012-06-18 02:21:53 PM

coco ebert: That sucks. My cousin had it but it went away. Hopefully it's a case like that.


It doesn't really go away. You can go into remission for some indeterminate amount of time if you have the relapsing-remitting form.
 
2012-06-18 03:16:16 PM
I was feeling really down today about my fribromyalgia, but reading what you all have said about MS has put things into perspective for me.

/grateful for my non-degenerative clusterfark
//god speed
 
2012-06-18 05:22:34 PM
Man, that sucks. Individual sclerosis is bad enough, but multiple sclerosis...yeesh.
 
2012-06-18 06:42:33 PM

frozenhotchocolate: A friend of mine got medical pot for having ms.

/he doesn't actually have ms


I know someone who decided to fake having MS, purely for the emotional manipulation of others and perhaps some meds and a handicapped parking pass to boot. She was quite personality-disordered and a born con woman to boot, and apparently that's an easy disease to fake on a very superficial level.

Had I not gotten out of her life as soon as I possibly could (said extraction took about a year), I would have told her that if you claim to have active, full-blown MS but (a) virtually never visit a doctor, (b) have no symptoms except claiming to need a cane for walking, and (c) never once have any symptoms that could interfere with you doing something you want to do, but supposely have flare-ups that keep you from doing things that you don't want to do, or that always require others to give you special treatment, then yes, people are going to assume you're faking it.

She's the only person whom I fear will find me and stalk me someday. Not to hurt me physically, but just so she can figure out a way to file a bogus lawsuit against me.

/srsly
 
2012-06-18 06:50:11 PM

part of the problem: Ooba Tooba: All that I can think of is Ozzy trying to pronounce the diagnosis.

As some one who lost a parent to MS and had been living with a minor form of the disease for most of my adult life, let me say- That was freakin' hilarious.
Well played.


:) Good luck to you!
 
2012-06-18 06:57:57 PM
Isn't that what his dad has?

or is his brain just so destroyed from years of drug and alcohol abuse?


/heard Ozzy has dyslexia. I thought "well that explains the crappy lyrics of the first few Sabbath albums...." but then I discovered that Geezer wrote most of them.
 
2012-06-18 07:38:20 PM
I was tentatively diagnosed in January, confirmed in April. Not taking any meds, and have no interest in it at this point. Putting my faith in the dietary protocol laid out by Dr. Terry Wahls. Her research makes a lot of sense.

The fact she recovered so dramatically from secondary progressive is a pretty good case, too.
 
2012-06-18 11:21:11 PM

imfallen_angel: darch: Thanks for making me cry over my morning coffee.

Cheers to you for being a real man and a real husband. I stand in awe.


Thanks, but I just tend to look at it in the way that even with her MS and other things, after dating women that were "normal", etc. I had never known a woman that could be simple, honest, without games or such, especially considering her previous life, as she was.

I have to admit that I honestly don't know where I'd be today or what I'd do if I hadn't met her, as even with her MS, her fibro and many other ailments that I don't want to get into, she is incredible.

To be blunt about it, when we met, I was a single dad with three kids, one being severely autistic, and she just wanted to be part of my life and be the mother that my kids never had (birth mother is a paranoid schizophrenic that doesn't see them)

So I'd take her, MS and all, and if something was to happen to her... well, you know... no one could ever take her place...


It's not much, but enjoy a month of TF, good sir. I hope I can be half as good of a husband as you have. *salutes*
 
2012-06-19 12:34:14 AM

Grand_Moff_Joseph: It's not much, but enjoy a month of TF, good sir. I hope I can be half as good of a husband as you have. *salutes*


Why, thank you.... *blush*
 
2012-06-19 12:37:10 AM
My girlfriend was diagnosed with MS after a bout of optic neuritis when she was 15. She is 20 now and doing quite well aside from chronic fatigue and feeling like garbage when it gets hot out. She has only had 2 other bouts of optic neuritis in the last 5 years. Her dad has progressive MS and had to go to long term care 2 years ago. She is on Avonex right now and whoever said the flu-like symptoms go away after awhile needs a good kick in the taint. We're hoping she can take some oral meds soon, but she is already on immune suppresants for dermatitis, so her neurologist isnt sure if she can take them.
Anywho, thats my CSB. MS sucks alot and I'm hoping they make some huge advances soon.
 
2012-06-19 08:24:46 AM

Pandar: I was tentatively diagnosed in January, confirmed in April. Not taking any meds, and have no interest in it at this point. Putting my faith in the dietary protocol laid out by Dr. Terry Wahls. Her research makes a lot of sense.

The fact she recovered so dramatically from secondary progressive is a pretty good case, too.


Has anyone explained to you that the reason why they put people on the drugs as soon as possible is to arrest the growth of lesions on your brain? It will potentially help keep the small spots on the Xray from becoming big spots. Do the macrobiotics or whatever it is people who are newly diagnosed seem to always do because BIG PHARMA has a cure or whatever you think, but please take the drugs. The earlier the better.

/seriously, stay away from the internet when you have a chronic illness. There's a lot of crazy farking people out there. Google "procarin patch" for an example of quackery that makes the rounds every couple years.
 
2012-06-19 09:27:49 AM

SockMonkeyHolocaust: Pandar: I was tentatively diagnosed in January, confirmed in April. Not taking any meds, and have no interest in it at this point. Putting my faith in the dietary protocol laid out by Dr. Terry Wahls. Her research makes a lot of sense.

The fact she recovered so dramatically from secondary progressive is a pretty good case, too.

Has anyone explained to you that the reason why they put people on the drugs as soon as possible is to arrest the growth of lesions on your brain? It will potentially help keep the small spots on the Xray from becoming big spots. Do the macrobiotics or whatever it is people who are newly diagnosed seem to always do because BIG PHARMA has a cure or whatever you think, but please take the drugs. The earlier the better.

/seriously, stay away from the internet when you have a chronic illness. There's a lot of crazy farking people out there. Google "procarin patch" for an example of quackery that makes the rounds every couple years.


Thanks for the tip, Monkey. I am pretty new to this whole thing, and I do have a specialist who has given me the "drug talk". Right now it feels like I need to do everything as far as lifestyle modifications go before possibly taking the plunge into expensive drugs with shiatty side effects. It helps me have a sense of control, and it is hard for me to accept that there isn't SOMETHING I can change to help my condition.

/Since January I forced doctors to test me for a whole battery of things to get a complete picture of my health. Was deficient in B12 and D, so I had a doc supplement and monitor my levels. Also found out I am pretty much allergic to anything that comes out of a box. Corn, soy, dairy, and gluten are big no-nos for me. Since cutting all of it out, my health has improved about ten times over. Except for, you know, the autoimmune thing.

//Thanks again.
 
2012-06-19 04:26:25 PM

Pandar: Thanks for the tip, Monkey. I am pretty new to this whole thing, and I do have a specialist who has given me the "drug talk". Right now it feels like I need to do everything as far as lifestyle modifications go before possibly taking the plunge into expensive drugs with shiatty side effects. It helps me have a sense of control, and it is hard for me to accept that there isn't SOMETHING I can change to help my condition.

/Since January I forced doctors to test me for a whole battery of things to get a complete picture of my health. Was deficient in B12 and D, so I had a doc supplement and monitor my levels. Also found out I am pretty much allergic to anything that comes out of a box. Corn, soy, dairy, and gluten are big no-nos for me. Since cutting all of it out, my health has improved about ten times over. Except for, you know, the autoimmune thing.


The autoimmune component is what the drugs target, and because they have to interfere with your immune system that is why they have such shiatty side effects. But it is the autoimmune part that is going to cause the bulk of long-term degenerative damage.

Eating healthy and doing everything you can for your overall health is very important, and will really help your quality of life. Especially when it comes to things like general stamina, energy levels, etc. But it won't arrest the disease. I would consider your specialists words carefully, they know what they are talking about. I know the drugs are expensive, and that really sucks. But ultimately they will help more than harm.

I checked on publications in Pubmed from the Dr you mentioned, there were 4. Two are sort of personal accounts/testimonials/editorial type articles, not research. One of those doesn't mention her nutrition or intervention at all while the other does but makes some wrong statements. Like that 70-90% of chronic diseases factors are environmental. That is from a review published in 2002 in science, we've come a long way in 10 years and have begun identifying more and more genetic factors for chronic disease risk. And lumping them altogether, even sub-types of the same disease, isn't a great idea. Some sub-types have a higher genetic component while others are more environmental. Phrases like "allergen load" and "toxic load" are big red flags as well.

The other two of her articles are about treatment in patients. It is important to note there that her protocol isn't just nutrition but also based on physical therapy and electrical neuromuscular stimulation, which builds muscle but isn't (AFAIK) an approved treatment for MS. Her two treatment papers are both case reports, meaning observations from a single patient. These are the medical equivalent of testimonials and anecdote. One of these is published in an alternative medicine journal not really noted for its scientific rigour. The one that mentions diet and nutrition is a single patient that is clearly herself (based on reference in the second paper to patient WT). Which isn't good for a scientific paper. The other (in the alternative journal) featured 9 patients is is just a physical therapy and electrical stimulation intervention showing improvement in gait and movement.

It seems perfectly reasonable that dietary intervention can help with some symptoms, especially cognitive and fatigue related ones. It also seems reasonable (and is recommended) that physical exercise and a tailored regimen can improve gait, strength, fatigue, etc. What she has published all seems great. But it isn't a cure. The autoimmune component will still feature long-term decline. An important thing to keep in mind is that even in the secondary progressive stage you can still have remissions as well.

Ultimately any choice is of course yours. I think this doctor means well, although her website gives me a few red flags in terms of selling stuff. It is also important to remember that clinicians are not research scientists. And their reading of the literature (that she is basing some of her stuff off of) isn't always much better than a lay-persons. I work with clinicians routinely as well as other scientists and so recognize we all have our limitations and areas of expertise. I would seriously consider the medications. They have greatly improved the quality of life and long-term prognosis for many people with MS.
 
2012-06-19 10:32:36 PM

Gunny Highway: jaybeezey: While I don't wish the disease on anyone, it's hard for me to feel sorry for Jack Osborne. Matbe it was the editing, but what i did see of him on the 8 episodes of the osbornes that I watched, made him out to be a petulant spoiled brat and I'm not going to jump on the love fest train because he got sick.

Wasnt he 17 when that show was released? He seems to have grown up since then.


Yup. Put himself through rehab and everything. He's still doing a whole lot better than Kelly, all things considered.

/the smart Osbourne kid is the one whose name I don't know
//because she stays out of the spotlight

//wouldn't wish MS on my worst enemy
 
2012-06-20 09:21:19 AM

entropic_existence: Pandar: Thanks for the tip, Monkey. I am pretty new to this whole thing, and I do have a specialist who has given me the "drug talk". Right now it feels like I need to do everything as far as lifestyle modifications go before possibly taking the plunge into expensive drugs with shiatty side effects. It helps me have a sense of control, and it is hard for me to accept that there isn't SOMETHING I can change to help my condition.

/Since January I forced doctors to test me for a whole battery of things to get a complete picture of my health. Was deficient in B12 and D, so I had a doc supplement and monitor my levels. Also found out I am pretty much allergic to anything that comes out of a box. Corn, soy, dairy, and gluten are big no-nos for me. Since cutting all of it out, my health has improved about ten times over. Except for, you know, the autoimmune thing.

The autoimmune component is what the drugs target, and because they have to interfere with your immune system that is why they have such shiatty side effects. But it is the autoimmune part that is going to cause the bulk of long-term degenerative damage.

Eating healthy and doing everything you can for your overall health is very important, and will really help your quality of life. Especially when it comes to things like general stamina, energy levels, etc. But it won't arrest the disease. I would consider your specialists words carefully, they know what they are talking about. I know the drugs are expensive, and that really sucks. But ultimately they will help more than harm.

I checked on publications in Pubmed from the Dr you mentioned, there were 4. Two are sort of personal accounts/testimonials/editorial type articles, not research. One of those doesn't mention her nutrition or intervention at all while the other does but makes some wrong statements. Like that 70-90% of chronic diseases factors are environmental. That is from a review published in 2002 in science, we've come a long way in 10 years and have begun identifying more and more genetic factors for chronic disease risk. And lumping them altogether, even sub-types of the same disease, isn't a great idea. Some sub-types have a higher genetic component while others are more environmental. Phrases like "allergen load" and "toxic load" are big red flags as well.

The other two of her articles are about treatment in patients. It is important to note there that her protocol isn't just nutrition but also based on physical therapy and electrical neuromuscular stimulation, which builds muscle but isn't (AFAIK) an approved treatment for MS. Her two treatment papers are both case reports, meaning observations from a single patient. These are the medical equivalent of testimonials and anecdote. One of these is published in an alternative medicine journal not really noted for its scientific rigour. The one that mentions diet and nutrition is a single patient that is clearly herself (based on reference in the second paper to patient WT). Which isn't good for a scientific paper. The other (in the alternative journal) featured 9 patients is is just a physical therapy and electrical stimulation intervention showing improvement in gait and movement.

It seems perfectly reasonable that dietary intervention can help with some symptoms, especially cognitive and fatigue related ones. It also seems reasonable (and is recommended) that physical exercise and a tailored regimen can improve gait, strength, fatigue, etc. What she has published all seems great. But it isn't a cure. The autoimmune component will still feature long-term decline. An important thing to keep in mind is that even in the secondary progressive stage you can still have remissions as well.

Ultimately any choice is of course yours. I think this doctor means well, although her website gives me a few red flags in terms of selling stuff. It is also important to remember that clinicians are not research scientists. And their reading of the literature (that she is basing some of her stuff off of) isn't always much better than a lay-persons. I work with clinicians routinely as well as other scientists and so recognize we all have our limitations and areas of expertise. I would seriously consider the medications. They have greatly improved the quality of life and long-term prognosis for many people with MS.


Omg. Couldn't have said it better. TAKE THE DRUGS. LISTEN TO A REAL NEUROLOGIST.

I got diagnosed five years ago and my mum volunteered at the MS society shortly after. She has met a lot of people who chose the "natural" methods who's prognosis from time of diagnosis has gone a lot quicker than it should have because they've decided to go alternative, natural etc etc.

I originally went on betaferon but that didn't work for me so I was changed to tysabri. I've been on it for five years now - I've gone from wheelchair and walking stick dependant, with my mother being my carer to totally mobile, married and working full time. People wouldn't know there was anything wrong unless I told them. Well, other than my amazing ability to fall asleep anywhere.

MS sucks, it really does, but you can make it more bearable but just sucking it up and taking the meds. Tysabri, gabapebtin, topamax, pariet, movicol, dexamphetamine, and another little tablet that helps me pee. It's all the drugs that keep me going!!
 
2012-06-20 05:52:37 PM
Genzyme's working on a new drug for MS and it sounds like a real winner. Link

Tysabri scares me big time, just thinking about how many other dormant viruses there must be in our genes that can be accidentally activated like that JC one.
 
2012-06-20 05:56:58 PM
*oops virus is called PML.

While it has killed 31 people the benefits still outweigh the risks.
 
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