It seems like one of those overblown diseases that people (usually women) milk for attention. Is it really *that* bad?
Is MS a big deal?
|by Refalca||reply 58||02/18/2013|
Yes, MS is a very bad disease. I had a great-aunt who had it and was put in a nursing home because she'd lost all movement in her legs and only had the use of (barely) one arm.
|by Refalca||reply 1||02/16/2013|
Are you serious? MS isn't one of those diseases people fake or exaggerate as far as I know. It's pretty awful and gets worse.
|by Refalca||reply 2||02/16/2013|
My husband's friend has it. He was diagnosed about 30 years ago. He's in his early 60's now and has been confined to a wheelchair for years.
|by Refalca||reply 3||02/16/2013|
It's a degenerative disease that gradually kills you by destroying your ability to move the muscles in your body. The lining around your nerve cells gradually disintegrates. It could go very quickly over a few years or drag on for twenty years. It's a pretty horrible disease.
|by Refalca||reply 4||02/16/2013|
It is an awful disease. It does seem to advance in different people at different rates (or some people might react to the medicine more effectivly). Some people seem to be able to live normally for a longer period, but it ends up being horrible for everyone. When you see someone in an advanced state, it is clear they are not exaggerating or faking it.
|by Refalca||reply 5||02/16/2013|
Men could get their legs blown off in an accident and act like it's not a big deal. They're terrible liars. Admitting weakness is impossible for them. Women are just more honest about these things.
|by Refalca||reply 6||02/16/2013|
OP, I hope this is a joke post. But if not, yes, MS is an awful disease. There's no whiff of skepticism around it like there is with fibro, for instance. It's real and awful.
|by Refalca||reply 7||02/16/2013|
Are you trying to make this a woman-hating post, OP? MS sufferers are mostly male, dummy.
|by Refalca||reply 8||02/16/2013|
The "women" remark gives away your agenda, idiot.
|by Refalca||reply 9||02/16/2013|
I hope you get it so you find out.
|by Refalca||reply 10||02/16/2013|
"As with many autoimmune disorders, the disease is more common in women, and the trend may be increasing. The CDC data suggest that MS is three times more common in women than in men in the United States."
|by Refalca||reply 11||02/16/2013|
When I first saw this thread I thought it was about Meryl Streep
|by Refalca||reply 12||02/16/2013|
Actually, it affects twice as many women as men, R8 -- but it's a real disease, OP.
|by Refalca||reply 13||02/16/2013|
Men do not lie about pain, they over-exaggerate it. I remember when my little brother (maybe 14 at the time)woke up screaming in pain and rolling on the floor swearing that his intestines were exploding. Naturally as his older sister I went into fix it mode and ran through the check list of things that could possibly be the cause of it.
I swear I asked him about twenty times if he just had to poop, but no! Every time it was "This is worse than that, much worse I need to see a doctor." So, because he refused the orange juice and water I offered and would not even try to use the bathroom, we drove to the urgent care where they checked his urine, checked his appendix, and after twenty minutes determined that he was constipated as I'd presumed.
Eventually, he got it out of his system and went back to playing video games. My sister and I still tease him about it. But, I actually think it's better that way, most of the women I know wouldn't think of going to the doctor unless they were at death's door.
|by Refalca||reply 14||02/16/2013|
Melody Thomas Scott (Nikki Y&R) has announced she is currently watching all six seasons of The West Wing so she can pattern her portrayal of an MS sufferer with accuracy.
|by Refalca||reply 16||02/16/2013|
Eh, it's not so bad.
|by Refalca||reply 17||02/16/2013|
R14, there are two types of males:
1) The hypochondriacs
2) The ones afraid of the doctor
|by Refalca||reply 18||02/16/2013|
Also, MS is a bitch no matter who has it. Any degenerative disease is going to take a while to show signs, but once it's taken over it's just a nasty ass bitch.
|by Refalca||reply 19||02/16/2013|
I don't know anyone with MS and my question was genuine. Didn't realize it's so horrible.
|by Refalca||reply 20||02/16/2013|
I know a couple of women who have had it for 20 years or so. One is an invalid, the other is in pretty good shape. The latter reacted very well to the medicine, and was diagnosed very early in the the course of her disease
I think that most people who get it do so when they're young. I'm not sure that there are people who develop MS in the late 40s or 50s.
|by Refalca||reply 21||02/16/2013|
My Aunt was diagnosed with it in 1978, and they told her she probably had about 3 years, tops. In the end, she lasted until 2006, but she was confined to a wheelchair for at least a decade and had to be fed by others since she couldn't hold silverware. Mentally she was still all there and we loved her a ton and were grateful for all the time we had, but it was a very long and slow debilitating decline and required superhuman patience and care from her husband/children who did it all without a second thought.
Another sufferer I know used to be one of the top pianists on Broadway, playing/conducting for some legendary productions. Sadly, MS has completely destroyed her ability to play. I did a performance with her a few years back, and her muscles simply would not allow her to play piano at all. It was one of the saddest things I've ever had to see.
So, yes. MS is truly a bitch and I wish to God we could cure it.
|by Refalca||reply 23||02/16/2013|
It's a very big deal for Teri Garr.
|by Refalca||reply 24||02/16/2013|
Jesus, just when I think a poster on Datalounge couldn't be any more stupid, someone like OP pops up.
|by Refalca||reply 25||02/16/2013|
Yes. I don't doubt that some milk it - as with anything. But it is very real and a very serious disease.
|by Refalca||reply 26||02/16/2013|
There is some VERY promising research going on. They can already reverse it in mice. Not just treat it, but reverse it and cure it.
|by Refalca||reply 27||02/16/2013|
I'll get it and be cured in a month.
|by Refalca||reply 28||02/16/2013|
|by Refalca||reply 29||02/16/2013|
"It seems like one of those overblown diseases that people (usually women) milk for attention."
Honestly, you sound mentally deficient.
|by Refalca||reply 30||02/16/2013|
I have a dear friend who has had multiple sclerosis for about 35 years.
As I understand it, there two main types:
1) the remitting and relapsing type. This is the MS that seems to respond best to treatment. You can have a bad bout of MS and then get somewhat better.
2) all other cases of MS. With this form, you never get back any function you've lost, i.e., there is no "remitting." Your disease progress is straight decline, with the only variable being your particular case as to how fast your MS progresses.
My friend has been in a wheelchair for about 25 years. Her mind is just fine; she is a delightful, wonderful, caring person. In addition to body muscle atrophy she is also experiencing some vision defects and facial muscle fasciculations.
At bottom, as someone up thread mentioned, it is a form of auto-immune disease where the body's immune system attacks the myelin sheaths surrounding the nerve fibers. Think of the myelin sheath as the plastic insulation covering the wires of an electrical cord.
When the sheath is destroyed the nerve impulses "short out" on their way to the target muscles. The muscles never get the signal and over time they atrophy, becoming totally useless over many years.
No OP, MS is no joke.
Your quality of life basically sucks and sucks harder every year you have it till you die.
I hope you never get it.
Finally as bad and heartbreaking as MS is, ALS (amyotrophic lateral sclerosis) is worse by about a factor of 10.
|by Refalca||reply 31||02/16/2013|
My cousin's husband had it. He was quickly confined to a wheelchair and when he started losing the ability to use him arms, he used the last of his strength to blow his head off
|by Refalca||reply 32||02/16/2013|
One of the biggest.
|by Refalca||reply 34||02/16/2013|
R33 = 17 year old idiot
|by Refalca||reply 35||02/16/2013|
It varies greatly from person to person. I had a relative with it who was in better shape physically as she aged than many of her non-MS affected peers. Then there are the Annette Funicellos who are completely incapacitated by it while still relatively young.
It's a maddening disease; when MS is diagnosed they don't give you your prognosis because medical science doesn't know how your individual case will play out. They can only monitor you and treat you with drugs and treatments that work for some but not others.
You can be walking with a cane at 70 like my relative was, or you can be completely dependent on physical aids and mobility devices. Only time and your response to the various treatments will tell.
Not very comforting to hear when one is diagnosed and looking for answers.
|by Refalca||reply 36||02/16/2013|
My sister has had relapsing-remitting MS for about 20 years. Her MRI shows a lot of frontal lobe lesions.
She's had minor involvement of her motor functions to date, but has developed a serious case of 'MS personality.' Her entire personality changed from kind, caring and diligent to extremely uncaring, irresponsible, dishonest and passive-aggressive. Put in charge of a lot of money in a family situation she was a disaster, and characteristic of the disorder, doesn't give a fuck about it. We're estranged over the damage she did.
My advice to people dealing with MS folks is to be alert for personality changes. Their denial will be huge, yet they can be helped with supportive therapy and proper meds.
|by Refalca||reply 37||02/16/2013|
|by Refalca||reply 38||02/16/2013|
[quote] It's a very big deal for Teri Garr.
And Annette Funicello.
My cousin also had it for a little over 30 years and eventually died from it last year.
|by Refalca||reply 39||02/16/2013|
I have to believe that the ignorance of the OP does some greater good by sharing their ignorance. I hope this thread educates all the other DLs who thought the same but were afraid to ask (or are not members).
My partner lost his father to MS (8 years post diagnosis) and I lost an aunt (5 years post diagnosis) and a good friend was just diagnosed and it is progressing rapidly.
Seattle has the highest MS rate in the world. Is there a link with Vitamin D? People of Scandinavian descent?
Interesting that the character Nikki on Y&R was diagnosed - didn't know that. My understanding is that women typically are diagnosed before age 40, usually before age 30.
|by Refalca||reply 40||02/16/2013|
The OP probably was watching Young and Restless this week where he saw one of the main characters get a diagnosis of MS.
|by Refalca||reply 41||02/16/2013|
And was looking for another way to put women down.
|by Refalca||reply 42||02/16/2013|
The farther away from the equator, the higher the incidence, generally. Scotland and Scandinavia have very high rates. Must have something to do with sunlight.
|by Refalca||reply 43||02/16/2013|
Isn't that odd – the latitude thing?
But nothing is conclusive, right?
|by Refalca||reply 44||02/16/2013|
[quote]The farther away from the equator, the higher the incidence, generally. Scotland and Scandinavia have very high rates. Must have something to do with sunlight.
I'm thinking genetics more like. Those further North have shared genetic traits of course like any area. Probably some Nordic/Viking genetic fail. They haven't found a big incidence in the far Southern hemisphere for instance, right?
|by Refalca||reply 45||02/16/2013|
It's the venison. I believe the Turner Valley in Alberta is said to have the highest rate in the world.
|by Refalca||reply 46||02/16/2013|
How could MS not be a big deal?
It is a disease, and it is a disease which can grow worse and has the potential to incapacitate a person.
|by Refalca||reply 47||02/16/2013|
it's going to kill Nikki Newman's last years as a romantic lead, that's for sure.
|by Refalca||reply 48||02/16/2013|
Nikki Newman's face changes so drastically from day to day.
Some days her face appears soft and lovely, while other days, her face is sagging with deep mouth to chin crevices.
It's not a matter of botox or fillers or a facelift - although she may have had those - but her face changes so drastically from day to day, that I guess it must be dependent upon how much sleep she has had, how rested she feels, how stressed she is on any given day, and/or her emotional state.
|by Refalca||reply 49||02/16/2013|
You forgot the "inspired by the Fibromyalgia thread" stuff, you're slipping OP
|by Refalca||reply 50||02/16/2013|
That's correct, r40. People usually show MS symptoms in their 20's, then it will go into remission until they reach their 40's. At least that's what I learned from my mother's case and a friend's case. Both lost vision in one of their eyes when they were about 25, but it returned. No other symptoms until they each hit mid-40's. My mother was eventually totally incapacitated, my friend responded somewhat to drug treatment but requires a cane to walk and suffers from extreme fatigue.
|by Refalca||reply 51||02/16/2013|
Have a read about Trish Langsford - an elite athlete from Australia - who was diagnosed in her early 20s with the chronic progressive form of MS.
[quote] At age 30, Trish sadly passed away in 2002 having spent four and a half years in a nursing home with end-stage multiple sclerosis. She was completely paralysed, artificially fed and morphine was administered four hourly during that entire time. She understood everything that was said but unfortunately could not communicate. It is hard to imagine what she could have been thinking.
Look at some of the photos of Trish.
And perhaps make a donation.
|by Refalca||reply 52||02/16/2013|
My nephew died of complications of MS in January, after a long, relentless 20-year decline, at age 45. He lived in Wyoming for the first half of his illness. He didn't have health insurance and Wyoming is a shitty fly-over state that doesn't believe in any government health help. They're stingy with whatever Medicaid they have and don't give it out to youngish male adults out of principle. When he couldn't take care of himself any longer, he moved to my sister's in Oregon, where the state helped him very much more, but his MS was too advanced to treat. Bed-ridden and wasting away for the past ten years was the saddest thing imaginable.
Note: My sister had moved to Oregon from Cheyenne some fifteen years earlier. My nephew stayed behind. He had gone to high school there and had friends and a job and was happy there (Don't ask my why. I've been to Cheyenne, and it's got to be the asshole of the United States. It's desolate, depressed, and backwards, and they've got to have the worst, blizzardy winter weather anywhere. Think Siberia.) He was somewhat in denial early on about his diagnosis, but saw a doctor a couple of times at my sisters urging, and that went nowhere. He was unable to see a specialist, and never got the appropriate early intervention and medicines that might have delayed the progression of this horrible disease.
|by Refalca||reply 53||02/16/2013|
A dear friend was diagnosed with it in his early thirties. He passed away at the age of 48. Just the thought of his agony is agonizing for me. I don't know how he found the strength to live with it for so long.
|by Refalca||reply 54||02/18/2013|
[quote]It varies greatly from person to person. I had a relative with it who was in better shape physically as she aged than many of her non-MS affected peers. Then there are the Annette Funicellos who are completely incapacitated by it while still relatively young.
True. My great-aunt has had MS for years. She's 75 and can still drive and walk just fine. She does tire easily and has to wear special lenses in her glasses for vision problems, but she had always taken care of herself and she's in a lot better shape than most people her age.
|by Refalca||reply 55||02/18/2013|
OP why didn't you look it up before posting? There's this called Google.
Yes, it is one of those diseases women complain about ... you know, along with brain tumors and paraplegia.
|by Refalca||reply 56||02/18/2013|
Artist and avant garde musician (Capt. Beefheart) died of MS in 2010. You can begin to see in this rather nice short film how disabled he was 16 years previous...MS had nearly robbed him of speech and a lot of motor function (not shown is his wheel chair.) And yes, personality-wise, Van Vliet was a notable 'pill.'
|by Refalca||reply 57||02/18/2013|
Killed one of my oldest friends.
|by Refalca||reply 58||02/18/2013|