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MISDIAGNOSIS

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dania

Post subject: MISDIAGNOSIS

Posted: Tue Nov 08, 2011 3:54 pm

Family Elder

Joined: Wed May 12, 2010 3:00 pm
Posts: 951
Location: St Lazare Quebec

http://www.globalnews.ca/16x9/video/dan ... ber5/video

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PointsNorth

Post subject: Re: MISDIAGNOSIS

Posted: Tue Nov 08, 2011 3:57 pm

Family Elder

Joined: Mon Sep 04, 2006 3:00 pm
Posts: 425
Location: LeftCoast Canada

Just a blood test to rule it in/out.

PN

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Albany 2010. Brooklyn 2011
Hurry up and wait.

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Sunnee

Post subject: Re: MISDIAGNOSIS

Posted: Wed Nov 09, 2011 12:04 am

Family Member

Joined: Mon Oct 17, 2011 2:53 am
Posts: 85

dania

This is what I have been trying to say all along, there are so many crossovers, Lyme, lupas, hughes syndrome, misaligned atlas, Candida, chronic fatigue syndrome and i imagine others too, all of these have been misdiagnosed at some point.

Wow great info.

Thanx

Sunnee

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frodo

Post subject: Re: MISDIAGNOSIS

Posted: Wed Nov 09, 2011 3:30 pm

Family Elder

Joined: Wed Dec 02, 2009 4:00 pm
Posts: 532

PointsNorth wrote:

Just a blood test to rule it in/out.

PN

It is not so easy. In fact there is no consensus about what MS is. There is no formal definition of the condition, and according to the (awful) McDonald criteria you have MS if you have marks in you MRI that you cannot explain. Of course, other doctors use other definitions.

The problem is not a lack of a test. The problem is a lack of consensus about which condition(s) should be named MS. You can rule out MS with the blood test, but still you get no information from a NMO-negative test.

Anyway, any person ever diagnosed with MS should have a blood test for NMO. And again MS associations are doing nothing to fix this problem.

_________________
You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

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cheerleader

Post subject: Re: MISDIAGNOSIS

Posted: Thu Nov 10, 2011 12:22 pm

Family Elder

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4695
Location: southern California

Thanks for posting, Dania...there is a cross-over of NMO and CCSVI, as researched by BNAC. BNAC included NMO in their MS category for CCSVI studies.
Here's a note I wrote up for Facebook today:

Quote:

There was a recent program aired on Canadian TV regarding patients with NMO (neuromyelitis optica or Devic's Disease) being misdiagnosed with MS.

Here is the program:
Dangerous Diagnosis
http://www.globalnews.ca/16x9/video/dan ... ber5/video

NMO is a bit different than MS, in that it is specific to demyelination of the optic nerve and spinal cord, not brain tissue.
But it has been related to CCSVI- and was included in the MS category by Zivadinov at BNAC-

The highest prevalence of CCSVI was seen in relapsing primary-progressive MS (89.4 percent), followed by non-relapsing secondary-progressive MS (67.2 percent), NMO (66.6 percent), primary-progressive MS (54.5 percent) and relapsing-remitting MS (49.2 percent). CCSVI prevalence was substantially higher in progressive MS than in non-progressive MS patients. In addition, patients with a progressive MS disease subtype had higher CCSVI prevalence than those with non-progressive MS.

http://www.sciencenewsline.com/medicine ... 00020.html

https://www.facebook.com/note.php?note_ ... 0319137211

I hope that the Hubbard Foundaton will make contact with the NMO foundation in San Diego--and was working on making that connection this morning. Lots to learn!
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

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questor

Post subject: Re: MISDIAGNOSIS

Posted: Thu Nov 10, 2011 1:16 pm

Family Elder

Joined: Mon May 22, 2006 3:00 pm
Posts: 223
Location: Northern Calif Monterey Bay Area

dania wrote:

http://www.globalnews.ca/16x9/video/dangerous%20diagnosis/video.html?v=2165006087&p=1&s=dd#november5/video

Interesting video, I'm sure our hearts all go out to those with this disease, especially those mis-dignosed with MS who are placed on the wrong meds/treatments.

But, what does this have to do with CCSVI? I'm sorry if I missed the connection. Cheerleader connects NMO with CCSVI in her post, which makes sense in this topic.

It confuses me why so many people seem to make so little use of the other forums at thisIsMS.com? Not every post belongs in the CCSVI forum, and those who only watch the CCSVI forum are missing out.

(I'm also lucky enough to work with a neurologist who gave me a blood test to test for this condition early on, so that I can be fairly certain I have MS, not NMO.)

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

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dania

Post subject: Re: MISDIAGNOSIS

Posted: Thu Nov 10, 2011 1:31 pm

Family Elder

Joined: Wed May 12, 2010 3:00 pm
Posts: 951
Location: St Lazare Quebec

I put it here as it made me think of all who have been given the label of MS and perhaps that is not what they have. I now wonder if MS is an actual disease? I am thinking it is more a condition of obstructed blood flow that causes neurological symptoms? If you look at a stroke victim, their symptoms are eerily similar to a lot of MS symptoms. And with what other DISEASE do you see such a wide range of symptoms differing between patients? For example I was diagnosed with MS 23 years ago. I have never had optic neuritis. Food for thought.

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jimmylegs

Post subject: Re: MISDIAGNOSIS

Posted: Thu Nov 10, 2011 3:08 pm

Volunteer Moderator

Joined: Sat Mar 11, 2006 4:00 pm
Posts: 7750

perhaps the 'general discussion' forum, seeing as we do not yet have an 'undiagnosed' area?

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

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Board index » Multiple Sclerosis » General Discussion

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