If it's on your mind and it has to do with multiple sclerosis in any way, post it here.


Postby dania » Tue Nov 08, 2011 3:54 pm

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Postby PointsNorth » Tue Nov 08, 2011 3:57 pm

Just a blood test to rule it in/out.

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Postby Sunnee » Wed Nov 09, 2011 12:04 am


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.


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Postby frodo » Wed Nov 09, 2011 3:30 pm

PointsNorth wrote:Just a blood test to rule it in/out.


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.
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Postby cheerleader » Thu Nov 10, 2011 12:22 pm

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:

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!
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Postby Quest56 » Thu Nov 10, 2011 1:16 pm

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.)

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Postby dania » Thu Nov 10, 2011 1:31 pm

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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Postby jimmylegs » Thu Nov 10, 2011 3:08 pm

perhaps the 'general discussion' forum, seeing as we do not yet have an 'undiagnosed' area?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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