English CCSVI supporters want to get undiagnosed

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

English CCSVI supporters want to get undiagnosed

Postby frodo » Fri Dec 10, 2010 4:06 am

English CCSVI supporting association ccsvi-uk.org considers the possibility of rejecting the MS diagnosis, given the discrimination towards this kind of patients to get vascular problems fixed.

"This is the reason for a possible new direction for us and consequently we are considering removing MS from our name as it may be that these two letters are holding back both thinking and treatment of CCSVI".

Link:
http://www.ms-ccsvi-uk.org/home/files/m ... orward.pdf
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Postby Cece » Fri Dec 10, 2010 7:41 am

MS diagnosis also makes life insurance impossible to buy, so I'd reject it if possible on that basis too.

From the same article:
Dr Mamoon Al-Omari presented the findings resulting from the treatment of his patients and concluded:
-CCSVI is a fact.
-Pattern of CCSVI is Predictable of prognosis in MS.
Treatment of CCSVI will:
-Relieve some MS symptoms.
-Decrease further attacks.
-Probably stop disease progression

I wonder if he's seeing the same patterns Dr. Zamboni saw in his type A, B, C, D breakdown?
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Postby HappyPoet » Fri Dec 10, 2010 9:10 am

Cece, finding out more about that comment sure would be interesting.

Slightly off topic: People can find their "Zamboni Type" by matching their venography findings with the pictures in Figure 2b. Explanations of types are in Figure 3, copied below.

I'm Type C only if I truly do not have any azygos problems. Because of symptomatic thoracic spinal lesions (TM), I require a second venography with IVUS to double check my azygos.

Somewhere I read that Zamboni says there will not be lesions found below the lowest level of azygos stenosis. Does anyone happen to know where I can find that statement?

http://jnnp.bmj.com/content/80/4/392.full

Figure 3

Patterns of chronic cerebrospinal venous insufficiency observed in multiple sclerosis (MS) cases. Normal: example of normal extracranial venous outflow direction. In particular, the black arrows depict the drainage of the internal jugular vein (IJV) system into the superior vena cava (SVC), and of the vertebral plexus (Vplex) outward from the spinal cord into the azygous system (AZY).

Type A (30%): this pattern is characterised by a steno-obstruction of the proximal azygous, associated with a closed stenosis of one of the two IJVs (red crosses). Reflux is always present, under all postural conditions, in the stenosed IJV (red arrow), with a compensatory controlateral IJV that appears with an ample cross-sectional area of the IJV. Reflux in the deep cerebral veins (DCVs) was detected by means of transcranial colour-coded Doppler sonography in 60% of cases. In the azygous vein the reflux has an effect as far as the lumbar veins, being able to re-enter the caval circle either through the system of the hemiazygous vein–left renal vein, or by rising again inside the rachis.

Type B (38%): this pattern is characterised by significant stenoses of both IJVs and the proximal azygous (red crosses). Reflux is present in all three venous segments (red arrows). Cerebral venous outflow for overcoming the IJVs stenosis re-enters the heart mainly through cervical collateral circles (fig 1B); for the hampered azygous vein outflow, the collateral circles include again the intrarachidian pathway, or the system of the renal-hemiazygous.

Type C (14%): this pattern is characterised by bilateral stenosis in both IJVs, with a normal azygous system (red crosses). Reflux (red arrows) occurs in the IJVs but not in the vertebral veins, with cervical or intracranial collateral circles that shunt blood towards the superior vena cava or the azygous vein system, respectively. The resulting overload of the azygous system is depicted by black bold arrows.

Type D (18%): in this pattern the azygous system was constantly affected in various segments (red crosses), resulting in a forced venous drainage towards the intrarachidian circles in an upward direction (red arrows). The vertebral veins appeared to be refluent, and the intracranial collateral circles seek to gain the IJVs, as confirmed by reflux detection in DCVs in 90% of cases. At times, the IJVs were also affected (six cases, 50%), causing an additional obstruction in these patients. IVC, inferior vena cava; L-REN, left renal vein.
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Postby HappyPoet » Fri Dec 10, 2010 9:49 am

I want to be undiagnosed, too. Seriously.

My brain and cord lesions and neurological symptoms are better explained by the models of CCSVI and CCVBP.

I will insist that my diagnosis of RRMS be officially reconsidered in light of my new CCSVI diagnosis (Type C) and the recent discoveries of my intracranial venous malformations and spinal column pathologies of scoliosis (side-to-side curvature of spine), spondylosis (osteoarthritis), stenosis (compression of cord and nerves), twisted upper cervical spine, and titled skull.

Comments?
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Postby CCSVIhusband » Fri Dec 10, 2010 10:04 am

It's not a bad idea at all HP ...

I mean MS isn't something neurologists can tell you a lot about, they don't know the cause, don't know a lot about it at all to tell you the truth ... unless you're on CRABs, why do you 'NEED' an MS diagnosis.

Any GP can treat you for your symptoms ... (pain, fatigue, etc) they can all prescribe the same medications for those kind of things.
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Postby Cece » Fri Dec 10, 2010 10:32 am

thanks, HP, now with my MRV results I'd classify myself as a 'Type B', with a clinical RR course.

Waiting to become a Type 'L' (liberated)!
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Postby CCSVIhusband » Fri Dec 10, 2010 10:41 am

Cece wrote:thanks, HP, now with my MRV results I'd classify myself as a 'Type B', with a clinical RR course.

Waiting to become a Type 'L' (liberated)!


Thing is Cece ... by Dr. Zamboni's percentages ... there is no one group that entirely summarizes the PPMS group (type D does the most ... but it's 18% of people, when only 5% of people are classified as PPMS).

This COULD explain exactly why I say ... there is no difference in MS ... it's not PP, RR, RP, SP ... it's where your lesions are (based on CCSVI stenosis). If a certain area is affected, you'll have different symptoms and perhaps a more aggressive course of "MS" if certain areas are killed in the CNS faster.

Again those things can LOGICALLY be explained by where stenosis is, how bad stenosis is, and time.

"MS" and neurologists can't currently explain that at all ... without making some outlandish assumptions. (and yet fail to mention at any point that almost all "MS" is progressive) ... remittances can be explained away by re-routing after damage.

It'll all work itself out, unfortunately it just takes time, and the early adapters are still working their way through CCSVI ... I hope, for the sake of those sitting on the dock, it's proven through trials or whatever else they need before it's too late for some. Anecdotal or not, when there's such a large collection of the same anecdotal responses to treatment, there's obviously something to it.
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Postby VeeBee » Fri Dec 10, 2010 10:44 am

Well diagnosis is supposed to help. It can be used to monitor progression and highlight stages in progression, instead used to distance treatment for a specific condition "CCSVI".

I highly doub't CCSVI is specific to MS although the label MS might be a good indicator that CCSVI is present and gives a reason to check.

I consider MS a label for the unknown. If they don't check for CCSVI based on the stats already circulating then MS label is detrimental and discriminates against every patient labeled with MS.

I better not offer name suggestions for the above group or they'd go in a huff.

Suggestion though, remove the "-" in the domain, waste of time in a non-competitive field. Horrible for type in traffic, horrible for branding
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Postby frodo » Sat Dec 11, 2010 7:08 pm

HappyPoet wrote:I want to be undiagnosed, too. Seriously.

My brain and cord lesions and neurological symptoms are better explained by the models of CCSVI and CCVBP.

I will insist that my diagnosis of RRMS be officially reconsidered in light of my new CCSVI diagnosis (Type C) and the recent discoveries of my intracranial venous malformations and spinal column pathologies of scoliosis (side-to-side curvature of spine), spondylosis (osteoarthritis), stenosis (compression of cord and nerves), twisted upper cervical spine, and titled skull.

Comments?


You have at least two additional arguments:

- When they diagnosed you with MS they didn't perform a vascular test. It is known that some vascular diseases (for example vascular myelopathy) can mimic MS lesions. Therefore your diagnosis was not well performed.

- There is no test that can yield a 100% positive for MS. That is a common agreement. Several other diseases like lyme can mimic MS and only a biopsy can make a difference.

Anyway I suppose that a diagnosis has no legal value, and therefore it would be enough to consider your diagnosis as a mistake and yourself a non-MS patient. Normally patients assume that their doctors are working in their best interest. We are living weird times.
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Postby scorpion » Sun Dec 12, 2010 10:53 am

Undiagnosed? I do not think even the leading researchers in CCSVI would suggest such a thing. I guess if they chose to decline any of the approved MS treatments it really would not matter but I hope it would not mess anything up for them down the road if they latter wanted an approved treatment. Has anyone ever heard Zamboni or any of the other leading researchers suggest such a thing??? It seems with CCSVI someone comes up with a "hypothesis", post it all over the web, and some people actually believe it. A little scary if you ask me. It would be nice to believe there was no such thing as MS just as it would be nice to believe that all neurological diseases have a quick fix but, unfortunately for me,it is highly unlikely this is the case.
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Postby HappyPoet » Sun Dec 12, 2010 1:50 pm

Undiagnosed. Prediagnosed. Misdiagnosed. Rediagnosed. Dediagnosed. Zediagnosed.

Scorpion, I fail to see what Dr. Zamboni or other researchers have to do with whether or not I was properly diagnosed by an MS specialist eleven years ago. In light of new diagnoses and findings, I have valid reasons for pursuing a reconsideration of my MS diagnosis; in fact, I should have done this long ago. I owe my thanks to TIMS for waking me up to become a "SKEPTIC."

I do have diagnosed CCSVI, ON, TM, FM, malformed dural sinuses, and several spinal column disasters, all of which paint a complicated picture. Believe me, I want the correct diagnosis, whatever that is, even if it's plural. I feel like it's been a long and winding eleven-year road that's taking me back to the beginning.
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Postby Johnson » Sun Dec 12, 2010 3:58 pm

HappyPoet wrote:...I feel like it's been a long and winding eleven-year road that's taking me back to the beginning.

I have the same feeling for my own situation. Just 18 years instead of 11.

It's eerie in some ways, and induces a nostalgia in me. I never listened to any of the neurologists, etc., and they never listened to me. I felt that I had issues in my Eustachian tubes because I could feel constriction in my neck. I never believed the auto-immune model either.

What a lot of lost years.
My name is not really Johnson. MSed up since 1993
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