Thousands Of NMO Patients Misdiagnosed w/ MS

Ruthless67 · Post by **Ruthless67** » Sun Nov 15, 2009 9:52 pm

This article on Medical News Today is the first time I’ve heard of Devic's disease or neuromyelitis optica. And it sure does sound a lot like Multiple Sclerosis.

Mayo Clinic Neurologist Reports: "Thousands Of NMO Patients Are Misdiagnosed With Multiple Sclerosis"
http://www.medicalnewstoday.com/articles/170788.php

NMO is a rare and debilitating disease that attacks the optic nerves and spinal cord, often causing vision loss, paralysis of legs and arms, and sensory disturbances.
Making the distinction between MS and NMO has been greatly assisted by Mayo Clinic's recent discovery of this NMO antibody. In fact, this is the first biomarker that has shown to be sensitive and specific for any central nervous system (CNS), inflammatory demyelinating disease.

At the conference, Mayo Clinic Neurologist Dean Wingerchuk, M.D., also reported that the prevalence and incidence of NMO have not been firmly established. Based on current data, in aggregate, it suggests that there are likely more than 4,000 people with NMO in the United States.

Excuse me for nitpicking, but I couldn’t help comparing these two sentences in the same article. "Thousands Of NMO Patients Are Misdiagnosed” and “there are likely more than 4,000 people with NMO” Makes me ask myself, now how many 1000’s are there in 4000?

Ruthless67 · Post by **Ruthless67** » Sun Nov 15, 2009 10:02 pm

Both the first posted link and this one below are interesting, but what caught my attention in the article below was the following statement.

What Is Devic's Disease? What Is Neuromyelitis Optica? What Causes Devic's Disease?http://www.medicalnewstoday.com/articles/170302.php

“What are the causes of neuromyelitis optica?
Experts are not sure what the exact causes of NMO are. We do know that the following factors are or aren't implicated in the disease:”

I KNOW we’ve all heard this same song and dance, you just have to insert MS for NMO! Also the part about “following factors are or aren't implicated in the disease:”, is that like, “partly sunny, partly cloudy? I mean how much more evasive and vague can they get?

I’m here because I’m looking for answers, not BS! And that’s what I’ve been finding here, ANSWERS, and discussions and information, a true wealth of information . We as a pro active group of MS’ers from all over the world, may get more done to promote scientific research, for a true cure, be it CCSVI or what it leads to, than ever before. I can see how surgeons and hospitals will benefit from CCVSI, and that‘s OK. I’m just tickled that I don’t see anything in it for the Pharmaceutical Researchers!

I mean, if that gobildegoop above is all they can come up with for answers so far, I’ll look somewhere else, thank you very much.

CureIous · Post by **CureIous** » Sun Nov 15, 2009 10:47 pm

What she said.

whyRwehere · Post by **whyRwehere** » Sun Nov 15, 2009 11:07 pm

Ruthless67 wrote: I’m just tickled that I don’t see anything in it for the Pharmaceutical Researchers!

That doesn't bother me too much.

Loobie · Post by **Loobie** » Mon Nov 16, 2009 4:58 am

I think I was the other way around, or maybe they just mis RE diagnosed me. I had an initial diagnosis of Devic's and had it changed when I started presenting with things other than bowel, eyes and bladder and when I wasn't having pronounced attacks. Look up OSMS and you will see that in Asia it's probably the other way around.

Shannon · Post by **Shannon** » Mon Nov 16, 2009 5:37 am

I think that many of us have been tested for Devic's NMO, due to so many presenting with only C-spine lesions and ON. It's important to make the distinction because the treatments are drastically different.

sou · Post by **sou** » Mon Nov 16, 2009 8:48 am

...and equally ineffective.

sou

Ruthless67 · Post by **Ruthless67** » Mon Nov 16, 2009 9:15 am

sou

You hit the nail on the head!

And can you believe this marketing ad! What do they base their #'s on? If they don't know what causes MS, how can they predict a steady rise?

The Global Multiple Sclerosis Market 2009-2024

http://www.reportlinker.com/p0117974/Th ... rosis-Mark

The multiple sclerosis (MS) market has total global revenues of over $6bn in
2008. Those revenues will exceed $9bn during the second half of next decade,
our new study shows. The World Health Organization estimates that over 2.5
million people suffer from multiple sclerosis worldwide. The prevalence and
onset of MS in children and adults is expected to rise steadily.

ozarkcanoer · Post by **ozarkcanoer** » Mon Nov 16, 2009 9:25 am

Ruthless... you sure are ruthless, LOLOLOL A market crash in MS is coming followed by a huge demand for interventional radiologists !!!! Maybe we could gamble a bit with all our inside knowledge !!!!!!!

Ruthless67 · Post by **Ruthless67** » Mon Nov 16, 2009 9:43 am

ozarkcanoer,

I'm willing to roll those dice, lol! I'm even willing to place the odds bet behind my line bet!@

Maybe when we all feel better we should go back to school and become interventional radiologists, now that would be truly "giving back"!

Lora

zap · Post by **zap** » Mon Nov 16, 2009 10:40 am

Oops - bad URL above - correct URL is:

http://www.prlog.org/10202389-the-globa ... 92024.html

Ruthless67 · Post by **Ruthless67** » Mon Nov 16, 2009 11:18 am

Thanks Zap

mrhodes40 · Post by **mrhodes40** » Mon Nov 16, 2009 11:53 am

The multiple sclerosis (MS) market has total global revenues of over $6bn in
2008. Those revenues will exceed $9bn during the second half of next decade,
our new study shows

You are right! This is absolutely heart wrenching to read about what a great and growing "market" we are --

I have had MS for 18 years and have seen this over and over again while very decidedly NOT doing as well as was predicted on the drugs offered to me as a member of that market being "served" . It is any wonder we get jaded and cynical?

It is natural I think for intelligent people to reach cynicism when the situation demands it.