[b]EDSS-FSS- MSF and MSIS[/b]

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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snowbound
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[b]EDSS-FSS- MSF and MSIS[/b]

Post by snowbound » Tue Jun 15, 2010 2:27 am

We need people whom have been liberated to start posting their verified EDSS before and after liberation which would help demonstrate the benefits to the medical community that treating CCSVI with balloon dilation is a safe and effective treatment to be considered in treating patients with MS.

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thornyrose76
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Post by thornyrose76 » Tue Jun 15, 2010 1:04 pm

I agree, for my own sake given the bad shape I'm in, how have people physically improved , I've watched a few videos online, the few I've seen there are definite improvements, one none unless that has changed,one a bit better, etc.

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MarkW
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Why measure these ?

Post by MarkW » Tue Jun 15, 2010 1:14 pm

Sorry to pour cold water on this but these measurements are highly subjective. Any neuro who wants to be negative will simply say any improvement is measurement bias.
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Mark Walker - Oxfordshire, England. Retired Industrial Pharmacist. 24 years of study about MS.
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http://www.telegraph.co.uk/news/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

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TvG
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Post by TvG » Tue Jun 15, 2010 10:36 pm

Snowbound, soon http://www.ccsvi-tracking.com will be available.
MarkW, you're right that most of these are subjective but this project also makes it possible to registrate and view measurements by professionals...

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Donnchadh
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Post by Donnchadh » Wed Jun 16, 2010 7:19 am

While self-assessed scores certainty are subject to bias, aren't assessments by neuro's using the same scale subject to their own personal agenda's? The field lacks objective, quantifiable measurement metrics.

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bluesky63
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Post by bluesky63 » Thu Jun 17, 2010 1:32 pm

I'm going to add that any assessment is subject to bias. I have had different doctors assess me and come to different conclusions. A trained neurologist who is an MS specialist, for instance, will notice abnormalities that another doctor may miss. Example: My neuro explained the "afferent pupil defect" to me that I have, which is a sign of optic neuritis, which different doctors did not notice, and in fact very few doctors ever pick up on at all.

I have also had a baseline sixth cranial nerve paralysis for years so I *always* have double vision to the left. Most doctors notice it immediately when doing a neuro exam, but I have had a number of doctors who wrote down that my cranial nerve exam was normal even with that and other really glaring abnormalities.

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