VENOGRAM DONE!

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

Postby Johnson » Wed Feb 10, 2010 3:29 am

I don't know what to say, leetz. Your head must be spinning

I'm sorry, but I haven't been up on my reading lately and missed whether you had the Doppler/MRV before the venography, and where you had this done. I'm feeling weird and paranoid these days, but when billions of dollars are at stake, my mind starts to wander. Was this in the US?

It does look as if the number of positives for CCSVI is in the 95% range, but what about the other 5%, which you might be part of? I wonder if a second opinion might be in order, too - from Drs Ludyga, Simka, Zamboni, if possible. Spirochete diseases (Lyme, syphilis) are possibilities as well. I was tested for both, and they were negative. I wholly expected the syphilis negativity, but I have always suspected the Lyme. It is often missed with just the standard Western Blot test. You might try the Melisa Foundation, in order to rule out Lyme disease for good. Heavy metals are suspects too. Melisa have clinics for consultation and testing in the US.
My name is not really Johnson. MSed up since 1993
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Postby HappyPoet » Wed Feb 10, 2010 6:42 am

Leetz,

I'm so sorry... my heart breaks for you.

I sent you a PM because I read in one of your posts that you live near me, and I'd like to exchange personal info so we can perhaps talk on the phone.

Several of us live near each other -- wouldn't it be great if we could all meet together?

~HappyPoet
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Lyme diagnosis

Postby sk8ter » Sun Feb 21, 2010 3:28 pm

The only two labs in Northern California that will pick up lyme through DNA is Igenex, in Palo Alto, Ca. and Clongen back east somewhere. Lyme can cause stenosis in veins and thickened blood. I think this can be a connection. I have lyme and am just starting to find narrowed arteries in my body. Melissa testing is not as good as these labs.
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Postby mhawks1990 » Sun Feb 21, 2010 10:27 pm

Leetz I am so sorry about your test results. I can imagine how frustrated you may feel. Just remember to not lose hope. MS is an uphill battle. This is one of my favorite quotes and it definitely applies to this.

"If you are going to win any battle, you have to do one thing. You have to make the mind run the body. Never let the body tell the mind what to do... the body is never tired if the mind is not tired."
-General George S. Patton
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Postby leetz » Mon Feb 22, 2010 1:35 pm

love that quote!!!well sometimes there is nothing else that we can do but just pray and wait...hoping that things do not get any worse!!!!may God give us all the strength that we need to survive this horrific disease!!!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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no vein obstruction found

Postby GiCi » Tue Feb 23, 2010 9:18 am

leetz, I think that it is possible that you do not have MS. Your initial diagnosis was not validated by an MRI scan, which I believe is more specific than biological tests.
Let's remember that Zamboni found no venous anomalies in patients affected by other neurological conditions.
In my modest opinion you should undergo an MRI scan before despairing.
best wishes,
GiCi
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HELLO

Postby leetz » Tue Feb 23, 2010 8:37 pm

YES... HAVE ALREADY GOTTEN THAT DONE AND HAVE LESIONS...BRAIN AND SPINE..
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby LR1234 » Tue Feb 23, 2010 8:42 pm

Hey Leetz, Have you def been tested for Hughes Syndrome?? (Sticky blood)?
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Postby avantitech » Wed Feb 24, 2010 2:33 am

LR1234 wrote:Hey Leetz, Have you def been tested for Hughes Syndrome?? (Sticky blood)?

Leetz, this is a simple blood test commonly performed by pathology clinics upon request of your medical practitioner/family doctor. It should've been done early in diagnosis phase as a differential to MS but not too many medicos even heard of it. Read up on it at http://www.hughes-syndrome.org/
Hope this helps
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Postby costumenastional » Wed Feb 24, 2010 2:40 am

Does it cause brain or spinal lesions formation? In the above link only mslike symptoms are mentioned.
Also, do oligoclonal bands show up?
I think it s a bit difficult to get a misdiagnosis when one meets the above criterias.
Other diseases are way more similar with ms.
Then again this is only my opinion.
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