Had the Phlebography/Venogram today-All my veins are NORMAL!

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

Postby scorpion » Sat Jun 26, 2010 10:49 am

TMrox wrote:Hi Adamt,

I'm glad that you had the venography without complications and free of pain. Probably you will feel a bit scruffy afterwards because of the contrast used, that might cause headaches.

Simka has found that 3% of tested MS cases do not have CCSVI. So your case is either one of this 3% or one that has been misdiagnosed.

To have peace of mind, probably you should send copies of the dvd with your venography to other experienced radiologist. Just to double check that no abnormalities were overlooked.

Have you confirmed your diagnosed MS case with other neurologists? Not all brain lesions are necessarily caused by MS. They need to fit certain criteria. So it might be a good idea to send copies of your MRI scans to other neurologists.

I was tested for Lyme's disease about a year ago. The lab report said that it was negative, but it also mentioned that there is a large margin of error so it could be a false negative. So another test was recommended.



Or there is not a strong connection between CCSVI and MS. You forgot that one.
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Postby TMrox » Sat Jun 26, 2010 12:39 pm

Serious studies (those who know how to use Doppler scan) have shown a strong correlation:

% MS patients with CCSVI (chronic cerebro-spinal venous insufficiency)

Zamboni 90% (University of Ferrara, Italy)

Zivadinov 55% -62% (University of Buffalo, USA)

Mamoon 84% (Jordan University of Science and Technology, Jordan)

*Simka 97% (Department of Angiology, Pszczyna, Poland)

Kuwait 96% (Mubarak Al-Kabeir Hospital, Kuwait)

Roel Beelen 91% (OLV Hospital, Belgium)

*Simka is the one who has tested the most MS patients for CCSVI. Over 400.

Here Dr. Brandes explains why the English and German studies did not use the Doppler correctly to diagnose CCSVI
http://healthblog.ctv.ca/post/When-stud ... mples.aspx
Last edited by TMrox on Sat Jun 26, 2010 4:38 pm, edited 2 times in total.
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Postby adamt » Sat Jun 26, 2010 3:21 pm

i sent you a PM Tmrox


Is there a possibility that i could have been misdiagnosed as negative CCSVI.

Looking at the photos , i dont have any stenosis, but im no expert
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Postby Salvatore24 » Sun Jun 27, 2010 1:12 am

scorpion wrote:Or there is not a strong connection between CCSVI and MS. You forgot that one.


TMrox and yourself also forgot to mention that MS has never been proven to be an auto-immune disease.
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Postby TMrox » Sun Jun 27, 2010 4:44 am

I agree with the Jordanian team, Simka and other experts in CCSVI

Multiple Sclerosis= Multiple Stenoses + something else.

In CCSVI theory, it is suggested that the malformation in the veins lead to the abnormal immune reaction seen in MS.
See here Zamboni explaining the theory of how CCSVI might contribute to that abnormal immune reaction:

http://hosted.mediasite.com/mediasite/V ... ebb41a8ba6

You might be interested in reading recent articles suggesting why MS is NOT considered an autoimmune disorder. An abnormal immune reaction is observed but that does not necesarily mean it is autoimmune.
http://www.direct-ms.org/pdf/Immunology ... immune.pdf

and this article which states, "MS as autoimmune disease: this is the most popular theory, although the disease does not fulfill all the criteria for a definite autoimmune disease."
http://www.ncbi.nlm.nih.gov/pubmed/19932200
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Postby NotFound » Sun Jun 27, 2010 11:02 am

Welcome to the team Adam.

This is NDwannabe posting (the site ate my password and I can not for the life of me restore my account, but this is an aside)

I had no CCSVI detected by Dr. Kostecki / Dr. Kuchmik team in Poland.

They ran a Lyme test and I tested positive.

It is determined that the Lyme disease is very, VERY elusive. You can test positive today and negative tomorrow. Currently there is no test that guarantees 100% accuracy (or even 90% or 80%)

Lyme also has many (7 or so?) co-infections which all respond to different antibiotics, so the fact that you did not have any response to doxycycline does not necessarily mean that you do not have Lyme.

Also, after researching Rife machine and Salt/C protocol I came to conclusion that they have no basis to be helpful in any shape or form (we can discuss this via PM or in a different thread)

Lastly, as I said before, I do not`classify MS as a disease, just like I do not consider "fever" a disease. Both are body REACTIONS to a disease or abnormality. And just like "fever" can be caused by different diseases, multiple lesions on the central nervous system (MS) can be caused by different diseases and / or abnormalities.

CCSVI is one of those abnormalities. Lyme can be one of those diseases. There can be more that we don't yet know about.
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Postby adamt » Sun Jun 27, 2010 12:20 pm

hi notfound, i sent you a PM to prevent changing the subject
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Postby whyRwehere » Sun Jun 27, 2010 12:37 pm

I don't know how I missed this, but that I've been sort of having a few days away from the forum. I'm glad to hear that you have no unfixable problems, but sorry that you are left in limbo-land...
My husband had a very narrow left jug plus the missing veins, but his symptoms are much like you have...go figure. Even with the vein fixed his legs are almost gone for walking...let's keep fighting for answers.
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Postby Daisy3 » Sun Jun 27, 2010 3:35 pm

whyRwehere wrote:I don't know how I missed this, but that I've been sort of having a few days away from the forum. I'm glad to hear that you have no unfixable problems, but sorry that you are left in limbo-land...
My husband had a very narrow left jug plus the missing veins, but his symptoms are much like you have...go figure. Even with the vein fixed his legs are almost gone for walking...let's keep fighting for answers.
Why


Did I read somewhere about some other vein being looked at for the mobilty problems? Let's hope thats it!
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Postby Rose2 » Sun Jun 27, 2010 3:54 pm

Hi! What did your Azygos look like and no idication for treatment there?
thanks. Rose
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Postby adamt » Mon Jun 28, 2010 9:26 am

whyRwehere wrote:I don't know how I missed this, but that I've been sort of having a few days away from the forum. I'm glad to hear that you have no unfixable problems, but sorry that you are left in limbo-land...
My husband had a very narrow left jug plus the missing veins, but his symptoms are much like you have...go figure. Even with the vein fixed his legs are almost gone for walking...let's keep fighting for answers.
Why


thats what im going to have to keep on doing, now I know im CCSVI negative.

Lets hope it wasnt a misdiagnoses!
Last edited by adamt on Mon Jun 28, 2010 9:47 am, edited 1 time in total.
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Postby adamt » Mon Jun 28, 2010 9:43 am

Rose2 wrote:Hi! What did your Azygos look like and no idication for treatment there?
thanks. Rose


here is the images of my azygos vein:
there were no treatments in the whole procedure, there wasnt need for any as the dr said all was fine.

Image
[/URL]
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