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No MS but CCSVI

PostPosted: Mon Jun 28, 2010 12:06 am
by Fliege
Hi,

do somebody know if there is somebody without MS but with CCSVI on this board ?
Ist there a special site / forum / facebook site for this people ?
Or how many there are till now ?

fliege

PostPosted: Mon Jun 28, 2010 3:29 am
by TMrox
I was treated for CCSVI three months ago. I don't have MS. I got Transverse Myelitis.

See:
http://www.myelitis.org/forum/viewtopic ... 21&start=0

PostPosted: Mon Jun 28, 2010 4:07 am
by sbr487
Fliege,

I read your posts and your response. You explain things much more eloquently than I could have ever done. Maybe because you dont have brain lesions ... :lol:

I have seen people on TM forum mentioning that it could be just natural healing process what you are seeing. But dont you think the differentiating factor is the presence of stenosis? Someone can suspect an issue and treat and get lucky with placebo but stenosis is real and when one treats it and sees relief, it cannot be natural healing or placebo ...

PostPosted: Mon Jun 28, 2010 4:42 am
by TMrox
Comments in the TM forum on those who after years and years do not see further improvements:

Yes, that is TM like, fatigue and pain never leave us. I’ve been on this and that med for treating spasms. I’ve been on that med for more than five years and have not had too bad side effects.

Comments on my case TM case:

Yes, that is TM like, some recovery afterwards.

I say, my condition was stuck with same symptoms for more than 14 months. Had unbearable headaches, spasms and pain. I was about to quit working altogether as my docs had written that my symptoms were normal residuals of TM, and that I had to come to terms with my condition.

I miraculously started recovering after I had the liberation procedure. What a coincidence is that?

No fatigue, no migraines, no spasms, no l’hermite neck, no hypersensitivity, no pain.

I stopped taking the anti-seizure, anti-pain medications yesterday. I no longer need them. I’m taking no medications whatsoever. That is exactly 100 days after the angioplasty.

PostPosted: Mon Jun 28, 2010 5:14 am
by sbr487
TMrox, you really rock.

I am curious to know how you came to know about CCSVI?

It would be great if researchers started looking if CCSVI is underlying cause of any other neurological diseases!!!

PostPosted: Mon Jun 28, 2010 5:53 am
by TMrox
I read in the BBC website about a top cardiologist, whom had lived with MS for decades. After Zamboni treated him for CCSVI he started walking without his cane.

http://news.bbc.co.uk/1/hi/health/8510437.stm

That triggered my curiosity. My family found a very experienced vascular surgeon, who had done the liberation procedure before in MS patients. He agreed to test me, despite that I do not have MS.

There are some studies suggesting that CCSVI might not be linked to some specific conditions (Parkinson disease, Amyotrophic lateral sclerosis-ALS, Myasthenia gravis, Multifocal motor neuropathy (MMN)
Ischaemic stroke, Transient ischaemic attack (TIA)_
See
http://jnnp.bmj.com/content/80/4/392.full.pdf

But other studies, like the Buffalo have found CCSVI among other conditions such as neurosarcoidosis, CIS and others. See
http://hosted.mediasite.com/mediasite/V ... ebb41a8ba6

More research is underway to see connections between CCSVI, MS and other conditions. See

http://www.myelitis.org/forum/viewtopic.php?f=11&t=5251

http://www.myelitis.org/forum/viewtopic.php?f=11&t=5247

PostPosted: Mon Jun 28, 2010 7:13 am
by sbr487
Thanks, Tmox, for your patient replies.

On a lighter side,

MS = CCSVI
TM = CCSVI

Since CCSVI is common among both these diseases, does it mean CCSVI is not the cause of MS (since it is present in other diseases too)

PostPosted: Mon Jun 28, 2010 7:26 am
by TMrox
TM can lead to MS.

Medical literature is unclear about the risk of TM evolving to MS, but some report the risk between 15-80%.

So the fact that some TM patients can have CCSVI does not discredit the theory that MS is linked to CCSVI. Quite the opposite.

PostPosted: Mon Jun 28, 2010 9:51 am
by Fliege
Thanks Tmrox, thanks sbe487,


sbr487, I have bain lesions :D and MS :D
and I'm thinking of checking my vens but I'm felling good in the moment. I had one check of my vens but the doc didn't know anything about CCSVI. He didn't find anything. But he didn't use the zamboni or Haacke protokoll.
It was quit clear for me that there are not a lot of peoeple here in TIMS without MS.

Tmrox, thanks for your information.

Fliege

PostPosted: Mon Jun 28, 2010 10:13 am
by cheerleader
If we can understand that venous disease throughout the body can lead to a host of problems--ie: Budd Chiari/liver disease/portal vein or CVI in the legs/venous ulcers--than we can understand that a venous blockage, stenosis, and reflux will harm different areas, depending on where the blockage is.


Dr. Zamboni was looking at the upper neck and chest veins, specifically. My husband had double jugular blockage, very high at the base of his skull. His reflux affected his brain, and he has 20 brain lesions to show for it. But the azygos and lumbar veins can certainly affect the spine, and if there is no jugular blockage involved, it is easy to understand why there would be just spinal lesions. Demyelination is a process...it is the body's response to infection or inflammation. But what is causing the demyelination?

Venous stenosis and reflux can cause demyelination. The area of stenosis and truncular venous malformations can vary from individual to individual...but the disease process remains the same. Different names for the same process: venous stenosis, slowed perfusion, reflux creating demyelination in the CNS.
cheer

PostPosted: Mon Jun 28, 2010 10:20 am
by Daisy3
Hi Cheer,

Do you have any info on what else might cause the mobility problems? Some other veins were mentioned...do you know if this is being researched??

PostPosted: Mon Jun 28, 2010 10:34 am
by TMrox
More research needs to be done on what is causing demyelination.

I have a vague theory what caused mine:

Azygous 100% blocked.
Internal left jugular vein more than 90%.

The stenosis in the jugular is just below my lesion in the neck. What a coincidence.

PostPosted: Mon Jun 28, 2010 10:52 am
by cheerleader
Daisy3 wrote:Hi Cheer,

Do you have any info on what else might cause the mobility problems? Some other veins were mentioned...do you know if this is being researched??


Hi Daisy-
Dr. Zamboni found that progressive MS patients with the worst mobility issues had azygos blockage, which he opened up and the vein remained patent in 97% of the cases...much better than the jugulars. But he also found that a few patients were missing a lumbar vein completely, and there was nothing he could do to help those cases. When a person is born without a vein it is called agenesis.
and TMrox is right...we need to understand what it causing the demyelination. Here is a study I linked to a in the first CCSVI discussion. It describes three autopsy cases of venous myelopathy...all had demyelination of the spine, all had different diagnoses..one was even "MS." But all had enlarged, torturous veins. Doesn't matter what you call it...it matters what is really going on...

Venous congestive myelopathy: three autopsy cases showing a variety of clinicopathologic features.
Matsuo K, Kakita A, Ishizu N, Endo K, Watanabe Y, Morita T, Takahashi H.

Department of Pathology, Brain Research Institute, University of Niigata, Niigata, Japan. matsuo@pb4.so-net.ne.jp
Abstract
We describe three patients with progressive myelopathy, in whom autopsy revealed spinal cord pathology compatible with that of venous congestive myelopathy (VCM) associated with dural arteriovenous fistula (AVF), formerly known as angiodysgenetic necrotizing myelopathy (Foix-Alajournine syndrome). In these three patients, common symptoms were gait disturbance and sensory disturbance of the extremities, and these symptoms slowly worsened. The clinical diagnoses varied and included spinal cord intramedullary tumor, cervical spondylosis and multiple sclerosis. At autopsy, all the patients showed enlarged, tortuous venous vessels on the dorsal surfaces of the spinal cord at the affected levels. In the affected spinal cord parenchyma, necrotic lesions manifested by various degrees of neuronal loss and gliosis, with increased numbers of hyalinized vessels, were evident. The presence or absence of associated spinal dural AVF could not be identified histopathologically. Even with the help of modern neurological examination methods, early and accurate clinical diagnosis of VCM is sometimes difficult. When encountering patients with progressive myelopathy, VCM, although recognized as rare, should be considered as an important differential diagnosis.

http://www.ncbi.nlm.nih.gov/pubmed/18179409

cheer

PostPosted: Mon Jun 28, 2010 2:46 pm
by TMrox
With great sadness I report that the support group in Transverse Myelitis
has permanently banned me from their board.


I was given no warning.

Aparently one or two individuals were very unhappy that I was spreading the news that I have TM and CCSVI.

Ignorance and arrogance kills.

PostPosted: Mon Jun 28, 2010 4:45 pm
by Cece
Wow! Well, you're welcome here. With what has been said about TMers have a 15-80% chance of developing MS, I think it's very relevant.