My neuro's response to CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

My neuro's response to CCSVI

Postby ozarkcanoer » Thu Dec 10, 2009 11:07 am

:D I have been emailing my neuro information about CCSVI for a couple of months now. We talked briefly about CCSVI at my last appointment. This morning he actually replied to one of my emails !!! Here is his response to me :

"Hi.  I admire your conviction and interest.  I have added CCSVI to my blog.   Hopefully new research will give us new insight into whether this theory is valid and whether treatment might work."

My neuro's website and blog :

http://mslivingwell.org/


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Postby Ruthless67 » Thu Dec 10, 2009 11:12 am

Way to go, that alone should garner some interest from his other patients and folks who log onto his web site.
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Postby CureIous » Thu Dec 10, 2009 11:16 am

Hey now good work! Whoo hoo!
Mark.
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Postby jess » Thu Dec 10, 2009 11:47 am

i was just diagnosed pls tell me this isent a joke about ccsvi im changing to dr ann cross at wash u shes supposto be the best in atleast this reagion has any one heard of dr ann cross i feel so lucky to be refered to her by a high level chief med. examner out of st louis this is the first time i ever sent a e mail i hope it works here goes thankyou everyone jeff
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Postby ozarkcanoer » Thu Dec 10, 2009 11:52 am

jess... From everything that I have heard, Dr Ann Cross is an excellent doctor. But I do not know her views on CCSVI. I hope this helps.

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Postby jess » Thu Dec 10, 2009 12:04 pm

thankyou ozark 4 your reply now everyone pls say a prayer
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Postby escape_goat » Thu Dec 10, 2009 4:36 pm

Jess,

When I moved to STL from out of state, my neuro recommended Dr. Cross. At that time, (and this was *years* ago) she wasn't accepting new patients... I saw another Dr. in her practice, and I didn't care for him. He's probably a great doctor, just personality-wise.

Dr. Singer is highly regarded as well at MoBap. I see Dr. Barbara Green at Saint John's and I like her very much. I don't know her attitude on CCSVI, my appointment isn't until the middle of next year.

I like Dr. Singer's website, I think that's great that he has one and has something to say about new developments ... I've been super happy w/ Dr. Green but I'd still almost like to check Singer out. Hmmmmm...

Thank you, ozark for all your hard work! :)
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Postby jess » Thu Dec 10, 2009 6:01 pm

escape thankyou 4 sharing that :) :)
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CCSVI

Postby zaksin » Fri Dec 11, 2009 5:29 am

Hi, does anyone know the best way to get tested for this, spoke to my dr, he wants more info, not sure where to start to be honest. Would a doppler ultra sound be the first place to start?. What would i need to ask for, can they do the veins with this or just the atteries. i just want to get a diagnosis first, if there blocked then go from there.[/b]
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Postby zaksin » Fri Dec 11, 2009 6:05 am

reply i received from Clinacal Vascular specialist

Dear Sir

Thank you for your enquiry to the SVT regarding specialist ultrasound scans.

Carotid Doppler ultrasound scans of the ARTERIES in the neck are widely available in the UK at NHS and private hospitals. Venous reflux of intra and extra cranial VEINS are less widely available in the UK and therefore I cannot advise you as to where this could be performed. Your best action would be to contact an MS specialist doctor based in the UK, who may be able to advise you where you can have this specialist non routine Doppler ultrasound test of the VEINS carried out.


So i ask myself, how do i get tested, diagnosed, i seem to be banging my heard against a brick wall
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