Risk factors for or clues to CCSVI???

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

Risk factors for or clues to CCSVI???

Postby prof8 » Fri Jul 24, 2009 8:25 pm

I recently stumbled on this forum for CCSVI and would like your thoughts. Obviously you cannot diagnose me and are not doctors/nurses (at least I don't think most of you are!) but I am stunned by the notion that MS could be vascular in nature. My case history seems related in strong ways.

I was diagnosed 2 years ago with optic neuritis, headache, dizziness, and cognitive issues. I have T2 lesions and black holes.

I have been on Tysabri for 1 year.

Now to the vascular issues.

1) one doctor thought I initially had antiphospholipid antibody syndrome (AAPS), the autoimmune blood disorder that makes you get clots, since I tested positive on two different but related tests. Ultimately, since it wasn't a high positive, and given other tests, I got the MS diagnosis. Sometimes AAPS can mimic MS.

2) I have had (and still do) terrible varicose veins. I even had surgery to strip those veins out of my legs several years ago long before the MS diagnosis. This is chronic venous insufficiency in the legs.

3) I have a venous angioma in my brain which is a congenital and structural abnormality that makes some veins twisted like "a starburst." It is known as the most common blood vascular anomaly in the brain but is simply viewed as a "birthmark" of sorts with really no effect. See:
http://www.brain-aneurysm.com/dva.html

4. Strokes, clots, and clogged hearts run in my family on my Mom's side. My great uncle has 10 stents (no joke!) in his body due to atherosclerosis and is barely alive. My great aunt had a fatal stroke in her brain. My grandmother has giant cell arteritis, another vascular brain disease. And there are others.

Okay, now......doesn't it seem like I should get tested for CCVSI???? Am I right in thinking there may be a connection with me? I called Dr. Drake's office today and left a message.

Thanks!
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Postby mrhodes40 » Sat Jul 25, 2009 8:52 am

welcome!
I would sure do so, just see what is there, more information never hurt anyone. I am glad you called let us know what happens.

Is your MS typical? relapse remits etc?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby prof8 » Sat Jul 25, 2009 10:51 am

Thanks for your response and welcome. I will definitely let you know if Dr. Dake's office responds. I left two phone messages. One with Alexandra but I also got diverted to his secretary's phone # at one point and also left her a message too.

My MS has been mostly quiet since diagnosis 2 years ago. No relapses, but I still have come-and-go cognition problems, some fatigue (fatigue got WAY better with Tysabri), tremors in my hands, and come-and-go shaky balance. I was told by a neurologist in the Mayo Clinic that I needed to be on something really strong because the black holes show my brain isn't healing very well.

So I am always ready to take the bull by the horns (bad cliche, I know!). Revimmune did not appeal to me because of the chemo and it wasn't clear how long it would last. But given also the vascular issues in my family and myself this seems like a worthy thing to pursue.

I will keep you posted!
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Postby mrhodes40 » Sat Jul 25, 2009 1:10 pm

this is a newer way of looking at MS so obviously not generally accepted, but for some people it is like a light bulb With your history it seems a good idea to at least get evaluated even if you decide to wait and get treatment sometime later after more is known. I understand wanting to be a little more aggressive if your first MRI had black holes already, man!
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 prof8 » Sat Jul 25, 2009 2:02 pm

Yeah, the black holes scared the crap out of me, esp. since the MS diagnosis came out of the blue (my GP had me get an MRI because of headache/balance/barely noticeable eye issue "just to be safe"-- what a bad surprise). I had no previous symptoms whatsoever until this started. I guess I'm one of those people with lesions and black holes but for now very mild clinical symptoms--at some point I imagine my brain will lose its plasticity and tip over into many more symptoms.

I will let you know about call backs. I will be persistent to get through!
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Re: Risk factors for or clues to CCSVI???

Postby zap » Mon Jul 27, 2009 9:53 am

prof8 wrote:3) I have a venous angioma in my brain which is a congenital and structural abnormality that makes some veins twisted like "a starburst." It is known as the most common blood vascular anomaly in the brain but is simply viewed as a "birthmark" of sorts with really no effect. See:
http://www.brain-aneurysm.com/dva.html


Interesting ... my mom has a neighbor that was diagnosed with MS for some years, before being told - nope, it's not MS, it's "just" that you have strawberry angioma birthmarks all over in your brain.

(his grandson and granddaughter both have them on her skin, but not in their brains)
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Re: Risk factors for or clues to CCSVI???

Postby prof8 » Mon Jul 27, 2009 11:38 am

zap wrote:
prof8 wrote:3) I have a venous angioma in my brain which is a congenital and structural abnormality that makes some veins twisted like "a starburst." It is known as the most common blood vascular anomaly in the brain but is simply viewed as a "birthmark" of sorts with really no effect. See:
http://www.brain-aneurysm.com/dva.html


Interesting ... my mom has a neighbor that was diagnosed with MS for some years, before being told - nope, it's not MS, it's "just" that you have strawberry angioma birthmarks all over in your brain.

(his grandson and granddaughter both have them on her skin, but not in their brains)


Wow, now that is very interesting to me. So I guess venous angioma's can leak and leave lesions all over the brain? And it suggests a vascular problem obviously. I came across an article that said that venous angiomas in the brain are more common in patients with multiple sclerosis (from 2004). See below. Maybe this is just another example of the vascular component of MS.

http://cds.ismrm.org/ismrm-2004/Files/001503.pdf
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