Do any other non-MS people ever have blocked CS veins?

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

Do any other non-MS people ever have blocked CS veins?

Postby Wonderfulworld » Wed Oct 21, 2009 1:42 pm

Just a question - do any non-MS people ever have these kind of blocked veins? What happens if blocked jugulars are detected, routinely?

I am going to my GP next week about CCSVI.
I had an MRI done about 3 months ago to investigate repeated migraines. It has suddenly occured to me when looking at the CCSVI MRI example that Cheer posted that I'm looking at the weird "anomoly" I saw on my MRI. I remember looking at the MRI, so does my husband, and we saw a huge blob beside one of my discs. I remember thinking I should ask my GP about it but forgot then. I'm going to ask my GP to take a look at that MRI again and refer me to a vascular consultant.
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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby cheerleader » Wed Oct 21, 2009 2:19 pm

Hey WW-
Dr. Zamboni has tested hundreds of MS patients, controls and folks with other neurological disorders (Alzheimers, ALS, Parkinsons, etc.) He's only found venous reflux in MS patients.

Dr. Zivadinov talked about the Jacobs CCSVI study while in Bologna, and told the story of how they have been tested hundreds of folks for CCSVI and "finally" found one normal control who tested with doppler showing blocked jugulars....but this control, a young woman, was given an MRI and shown to have lesions on her brain. She ended up with an MS diagnosis ...he was blown away with this. Jacobs is unblinding the first part of their study next month. Sharon's daughter had a similar experience...she saw Dr. Dake, although she was never diagnosed with MS, she had blocked jugulars. A subsequent MRI done at Stanford showed lesions on her brain.

The jugulars will not show up on MRI, you need an MRV (magnetic resonance venography) to show the veins. Bring the research to you doc-and see if you can get a vascular consult.
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Wonderfulworld » Wed Oct 21, 2009 2:34 pm

Thanks a million Cheer, that's really good. I could just imagine my GP asking that question so at least I'll have the answer for him.

I'm a wee bit confused - why would the anomoly not show up on MRI considering Dr. Haake is using it?
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby cheerleader » Wed Oct 21, 2009 3:05 pm

Wonderfulworld wrote:Thanks a million Cheer, that's really good. I could just imagine my GP asking that question so at least I'll have the answer for him.
I'm a wee bit confused - why would the anomoly not show up on MRI considering Dr. Haake is using it?


Dr. Haacke is using SWI-MRI (susceptibility weighted imagery) which doesn't show white matter lesions, it shows iron deposited in the brain. He's also using MRV (magnetic resonant venography) to show vein blockage...it's a different protocol than the usual standard MRI...he's started a whole new MS protocol, to show the real damage done to the brain. Check out his website, maybe show your doctor, too- pretty impressive imagery-
http://www.ms-mri.com/
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Thu Oct 22, 2009 8:09 am

Wonderfulworld wrote
Just a question - do any non-MS people ever have these kind of blocked veins? What happens if blocked jugulars are detected, routinely?


Cheer mentioned in the above post that my daughter showed a blockage -and that she was not CDMS. I wanted to add -- if my daughter had been seen by a neurologist, she would have passed all of the neuro muscular tests -- a neuro would have considered her to be a normal, healthy young lady. The MRI/MRV's images showed lesions and a blockage. She is a good example of the disease pattern --- damage is happening in the brain before there are recognizable neurological deficits.

Sharon
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Postby mrhodes40 » Thu Oct 22, 2009 8:51 am

would have considered her to be normal healthy...


just to clarify, she had typical MS lesions on her brain when they looked, right ? Then neurologist looking at her MRI would have known she had MS...he just would not have known by merely looking at her walking and stuff, right Sharon?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Thu Oct 22, 2009 9:33 am

Marie wrote
just to clarify, she had typical MS lesions on her brain when they looked, right ? Then neurologist looking at her MRI would have known she had MS...he just would not have known by merely looking at her walking and stuff, right Sharon?


Yes, Marie you are correct. My daughter had lesions which are indicative of MS. You could also say that she had some symptoms which could have been associated with MS (now that she knows she has the lesions), but were not associated to MS by her GP. Such as: she was diagnosed with Reynaud's disease about one year ago - infrequently she experienced a tingling and cold at fingertips on both hands at the same time (GP told her if it was MS, it would have been one sided) -- she also had facial and gum pain after dental work this Spring. Since the procedure, the facial and gum pain have diminished; she has experienced the cold fingertips since the procedure. Some other "could be or not" symptoms - tiredness in the afternoon (she is a very busy mother of two young children--normal to be tired sometimes, right?); some heat sensitivity to hot baths, but not to hot outside temperature; female hormone issues --- that in itself is loaded with symptoms --- nothing more nor nothing less than friends her age. :( :wink:

Sharon
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Postby Wonderfulworld » Fri Oct 23, 2009 2:15 am

That's amazing Sharon. I'd seen your post before about your daughter but it really is startling that CCSVI flagged up undetected MS. Gosh!
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby MaggieMae » Fri Oct 23, 2009 5:56 am

Sharon,

You are absolutely correct that your daughter's symptoms are similar to any busy mom or woman experiencing every day life. Not to say that your daughter's symptoms would not have become more severe as time goes on, but doesn't it blow your mind to think that there are people walking around who will never know in their lifetime that they have MS or CCSVI because their symptoms will be mild. Especially if they do not have someone in their family with MS, they could go through life thinking they have a pinched nerve or some other issue.
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Postby lobra » Fri Oct 23, 2009 6:51 am

Hi,

it is known from autopsy studies since decades, that there are as many "silent ms" cases as known ms patients. So these silent ms people never had symptoms that lead to an ms diagnosis (before death). Of course, diagnosis was not so easy at this time without MRI.
The CCSVI explanation of this fact makes more sense then the autoimmune theory. Today, within the CCSVI-ms-people group, the degree of venous flow problems seems to be quite different - no direct link from the stenosis percentage to EDSS... So, maybe there is also different "resistance" of the tissue aganst reflux? Like not everybody with high blood pressure gets a heart attack or stroke.
Anyway, detecting those who likely will get ms symptoms in the future (because they have jugular stenosis/reflux) would be an enormous step forward. Maybe every young man, woman will have Doppler examen to check this; this would be real prophylactic medecine.

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Postby Sharon » Fri Oct 23, 2009 2:28 pm

MaggieMae wrote
doesn't it blow your mind to think that there are people walking around who will never know in their lifetime that they have MS or CCSVI because their symptoms will be mild

Yes, MaggieMae --- I think the 400,000 people with MS in the United States has always been a low number just based on my personal history. I probably had MS 30 years prior to diagnosis.

Sharon
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Postby radeck » Fri Oct 23, 2009 3:07 pm

Great point MaggieMae. Especially for people with MS who have children like Sharon it would be enormous relief to have a way or predicting whether they are affected and intervene. My son was just born less than a year ago and the possibility of being able to intervene, if necessary, with the further improved methods that may be available in a few years makes me just so happy, it's almost too good to be true.
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Postby CRHInv » Fri Oct 23, 2009 5:29 pm

Radeck - I am with you this is all about my kiddos! The C, R, and H are my kids initials, that's how I get CRH Inv.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Sharon » Fri Oct 23, 2009 7:46 pm

DITTO to CRHInv and radek -

Its the young ones!!
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Postby bestadmom » Fri Oct 23, 2009 8:26 pm

I;m with you on the kids - I have 16 and 12 year old daughters.
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