why Als lack of interest with that they have ccsvi ..!!

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

ALS

Postby Rosegirl » Fri Feb 04, 2011 6:25 am

My mother had ALS. My venogram showed I have CCSVI.
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Postby IHateMS » Fri Feb 04, 2011 11:34 am

to the trolls who have nothing positive to say about anything..... get a life or is this your viagra?

how pathetic
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Postby HappyPoet » Fri Feb 04, 2011 1:06 pm

sara-sama wrote:Yesterday ,Patient with Als (Member in another forum) told me that she opened jugular veins, two months ago, now felt improvement in swallowing and movement .

Also, i found this topic about the experiences of other with ccsvi
http://www.alsforums.com/forum/general- ... ccsvi.html

Thank you for sharing this patient's story and for giving this link.

I spent a lot of time exploring the ALS/MND forums. If TIMS' naysayers spent time in those forums, I think they'd drop their smart aleck personas. These dear, sweet people and their carers don't fight with each other -- they may disagree, but they don't fight -- which just might have something to do with the horrible fact that 90% of them will be gone within three to five years from being diagnosed... there is no time for anything but brutal honesty with no wasted words. They are so similar to people with end-stage MS.

<tears>
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Postby IHateMS » Fri Feb 04, 2011 1:25 pm

our neighbor was dx with als in january 2009... he died last week at age 53. it is a cruel disease.
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Postby HappyPoet » Fri Feb 04, 2011 3:12 pm

IHateMS wrote:our neighbor was dx with als in january 2009... he died last week at age 53. it is a cruel disease.

<tears>
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CCSVI, MS and ALS

Postby flyingwithoutabroom » Thu Feb 24, 2011 3:01 pm

I am so grateful to have found this thread. I was diagnosed with MS 25 years ago (I am now 43), and my mother and cousin also have MS. My niece has symptoms, but is undiagnosed.

Last December, my mother and I went to Sofia, Bulgaria where we were tested and (very successfully) treated for CCSVI. While we were there, I learned from my surgeon that they had also treated 8 ALS patients, and all but the 2 most advanced cases showed immediate improvement in symptoms.

Then in January my mother's sister was diagnosed with ALS. Because of the information we heard in Bulgaria, she is going to be tested (and hopefully treated) for CCSVI (she can get this done in N America, rather than having to travel to Europe). Until now, I had not heard of any other facility finding a link between ALS and CCSVI, so the information about Dr Sinan in Egypt definitely gives me more hope.

Do any others out there have MS and ALS in the same family tree? I wonder how common this is. I don't believe it is a coincidence, and I definitely hope CCSVI is the common link.
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Re: CCSVI, MS and ALS

Postby AlmostClever » Thu Feb 24, 2011 3:35 pm

flyingwithoutabroom wrote:I am so grateful to have found this thread. I was diagnosed with MS 25 years ago (I am now 43), and my mother and cousin also have MS. My niece has symptoms, but is undiagnosed.

Last December, my mother and I went to Sofia, Bulgaria where we were tested and (very successfully) treated for CCSVI. While we were there, I learned from my surgeon that they had also treated 8 ALS patients, and all but the 2 most advanced cases showed immediate improvement in symptoms.

Then in January my mother's sister was diagnosed with ALS. Because of the information we heard in Bulgaria, she is going to be tested (and hopefully treated) for CCSVI (she can get this done in N America, rather than having to travel to Europe). Until now, I had not heard of any other facility finding a link between ALS and CCSVI, so the information about Dr Sinan in Egypt definitely gives me more hope.

Do any others out there have MS and ALS in the same family tree? I wonder how common this is. I don't believe it is a coincidence, and I definitely hope CCSVI is the common link.


This is incredible! Thanks for posting!

First I've heard of ALS patients getting treated! What has Hubbard done with ALS? I thought he might be testing/treating...

Again - hopefully CCSVI is the tip of the iceburg!

MS
ALS
Chronic Fatigue Syndrome
Parkinson's
etc.? 8O
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby CureIous » Thu Feb 24, 2011 7:37 pm

We are raising funds at work for a coworker that recently took a retirement at age 37 due to ALS, they gave him a year. I called and talked with him a bit (didn't know him personally, but certainly do now), he has 3 young kids like me and then this happens. I cannot begin to convey what an incredible person he is, resigned to his fate, but as chipper as someone who just won the lotto. He is wasting no time nor effort to live life to the fullest as best he is able. He had a semi-professional football career and seems to think that the recent info about head injuries and such in relation to ALS and other diseases has some merit.

I wrote him a 7 page letter and included a disk with my video on it so it all makes sense, and gave whatever anectdotal reports I could find from the net, which weren't many insofar as ccsvi vs. als goes. I pointed him towards Hubbard and/or PI but he has my number if he wants to talk some more on it, we speak plainly in the field so no need to mince words, my intention was mainly to convey that there may be something there for ALS patients, but that it's very shaky ground without a solid theoretical basis at least that I could find.

It's like you don't want to give any inkling of false hope, but at the same time would feel remiss to not at least mention that others are doing such.

Will update should he decide to do anything, assuming of course I get kept in the loop at all. Out of my hands now...
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Re: CCSVI, MS and ALS

Postby julu » Thu Feb 24, 2011 9:00 pm

flyingwithoutabroom wrote:
Do any others out there have MS and ALS in the same family tree? I wonder how common this is. I don't believe it is a coincidence, and I definitely hope CCSVI is the common link.


Yep. Maternal grandfather had ALS, although apparently a longer-than-usual course. For several years the Mayo Clinic couldn't decide if it was MS or ALS.
Apparently the two can look quite similar. Perhaps because they have the same origin?
RRMS diagnosed 8/09; Copaxone 9/09; Copaxone + estriol study at University of Minnesota 10/09<br />
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Postby Cece » Thu Feb 24, 2011 9:25 pm

It's odd, patients with ALS have reduced cerebral flow primarily in the frontal lobes, but also the temporal cortex, thalamus, hippocampus and central white matter. (According to the links on the previous page. They definitely have reduced cerebral flow, as do people with MS/CCSVI.)

If you look at this as a cerebral venous drainage issue, where would a blockage have to be to predominantly affect the frontal lobe? My understanding in MS is that this area is largely spared. Could it be a disorder of the capillaries or small venous drainage routes? What drains the frontal lobes, exactly?
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Postby gibbledygook » Fri Feb 25, 2011 6:30 am

This is highly anecdotal so I may have remembered the details incorrectly but at the time I visited Professor Dake, he was seeing an astrophysicist with Lou Gehrig's. He thought there were problems in the shoulder area venous/arterial systems.

I believe that sports people are more prone to this disease.

Amyotroph Lateral Scler. 2010 May 3;11(3):289-92.

Amyotrophic lateral sclerosis, physical exercise, trauma and sports: results of a population-based pilot case-control study.
Beghi E, Logroscino G, Chiò A, Hardiman O, Millul A, Mitchell D, Swingler R, Traynor BJ.

Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy. beghi@marionegri.it

Abstract
Our objective was to investigate exposure to physical exercise and trauma in patients with amyotrophic lateral sclerosis (ALS) compared to the general population. Previous studies in this area have yielded conflicting results. Using population-based ALS registries from Italy, the UK and Ireland, newly diagnosed patients with definite, probable or possible ALS were enrolled in a case- control study with two age- and sex-matched controls for each patient. Source, intensity and duration of physical activity and history of trauma were recorded. We here present the results of a pilot investigation. We studied 61 patients and 112 controls. Forty-one per cent of cases and 17.0% of controls (p = 0.001) had blue-collar occupations; 13.1% versus 3.6% reported strenuous physical activity at work (p = 0.05). Compared with controls, ALS patients had a longer exposure to work-related (10.7 vs. 7.3 years; p = 0.02) and sport-related physical exercise (9.6 vs. 5.2 years; p = 0.005). Three patients (0 controls) reported professional sports (p = 0.04). Traumatic events were similar. Blue collar occupation (OR 4.27; 95% CI 1.68-10.88) and duration of sport-related physical exercise (OR 1.03; 95% CI 1.00-1.05) were independent variables in multivariate analysis. We concluded that ALS is associated with physical exercise but not with traumatic events.

PMID: 20433412 [PubMed - indexed for MEDLINE]


Amyotroph Lateral Scler. 2009 Aug;10(4):205-9.

ALS in Italian professional soccer players: the risk is still present and could be soccer-specific.
Chio A, Calvo A, Dossena M, Ghiglione P, Mutani R, Mora G.

Department of Neuroscience, University of Turin, Turin, Italy. achio@usa.net

Abstract
We previously found an increased risk for ALS in Italian professional soccer players actively engaged between 1970 and 2001 (n =7325). The present study extends previous work with a prospective follow-up of the original cohort to 2006 and investigates the risk of ALS in two other cohorts of professional athletes, basketball players (n =1973) and road cyclists (n =1701). Standardized morbidity ratios (SMRs) were calculated. Among soccer players three new cases of ALS were identified, reaching a total of eight ALS cases (mean age of onset, 41.6 years). The number of expected cases was 1.24, with an SMR of 6.45 (95% CI 2.78-12.70; p<0.00001). The risk of ALS was higher for careers lasting >5 years, for midfielders, and for players engaged after 1980. No basketball player and no cyclist developed ALS. This prospective extension of the Italian soccer players cohort survey confirms the highly significant risk of developing ALS, the young age of onset, the dose-effect risk and a predilection for midfielders. The absence of ALS cases in professional road cyclists and basketball players indicates that ALS is not related to physical activity per se.

PMID: 19267274 [PubMed - indexed for MEDLINE


maybe injury to the spinal cord contributes:
Neurodegener Dis. 2011 Feb 23. [Epub ahead of print]

Spinal Cord Herniation: A Missing Piece in the Pathogenesis of Amyotrophic Lateral Sclerosis and Multiple Sclerosis?
Manara R, Citton V, Nardetto L, Semplicini C, Burlina A, Trevisan C, Argentiero V, Baracchini C.

Neuroradiologic Unit, University Hospital of Padua, University of Padua, Padua, Italy.

Abstract
Background: Idiopathic spinal cord herniation (SCH) is a rare and often misdiagnosed condition characterized by displacement of the spinal cord through an anterior defect of the dural sac. This condition determines continuous focal trauma of the spinal cord, causing slowly progressive myelopathy. The peculiar MR scan findings, particularly sagittal T(2)-weighted images, allow its recognition. Objective: Herein, we report 3 cases of SCH and suggest a possible association with trauma-related neurodegenerative or chronic inflammatory diseases. Methods: We reviewed the clinical files of all patients admitted to our hospital with a history and signs of progressive myelopathy (paraparesis and/or lower extremity hypoesthesia) who were diagnosed with SCH by MRI. Results: We found 3 female patients (37, 69 and 68 years of age) with a diagnosis of SCH. Two of them presented with concomitant, relatively rare disabling neurological diseases, namely amyotrophic lateral sclerosis and multiple sclerosis. The third patient underwent surgery and gradually recovered over 6 months. Conclusions: Persistent central nervous system trauma due to idiopathic SCH might provide an unexpected hint about the pathogenesis of amyotrophic lateral sclerosis and multiple sclerosis.

Copyright © 2011 S. Karger AG, Basel.
PMID: 21346318 [PubMed - as supplied by publisher]
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby cheerleader » Fri Feb 25, 2011 11:12 am

Gibbs is right, Dr. Dake did see a gentleman with ALS, and he noted some strange circulatory issues (not specifically CCSVI), but he felt that repairs to the vasculature would probably not turn back the clock on his disease, that there was a type of Wallerian degenerative process that, once begun, couldn't be stopped with interventional radiology and corrected blood flow.

We report here that motor axons undergoing Wallerian degeneration show an increase in chronaxie and changes in excitability
largely similar to Type 1 abnormalities found during the timecourse
of ALS (Kanai et al., 2006; Vucic and Kiernan, 2006).
Our data suggest that a gradual decrease in functional ionchannels
precedes conduction failure and axonal disintegration during Wallerian degeneration. It is therefore possible that asimilar ‘acute channelopathy’ is reflected in excitability measuresduring axonal degeneration in ALS. This view is supported by thefact that Type 1 abnormalities in ALS appear maximal duringdisease stages when the largest number of axons degenerate asalso observed in ALS (Winhammar et al., 2005; Vucic and Kiernan,2006). Thus the contribution of degenerating but still conducting
axons to excitability measures should be taken in account when
interpreting excitability measures in disorders characterized by
axonal degeneration.


http://brain.oxfordjournals.org/content ... 1.full.pdf

I write this, not to be cruel, but to be honest. ALS is horrific. We have a dear friend in a nursing home in San Diego with ALS, and believe me, if Jeff and I felt there was anything here for him, we'd help him get treated.

The ISNVD is looking at all neurovascular disease and how circulatory issues can contribute to the genesis of neurological disease....but just because a vascular issue can begin the process does not mean that repairing it will stop it.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ikulo » Fri Feb 25, 2011 2:58 pm

gibbledygook wrote:he was seeing an astrophysicist with Lou Gehrig's.


My inner geek wonders where this was just "an" or "the" astrophysicist with Lou Gehrigs. 8O
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Postby Cece » Fri Feb 25, 2011 3:45 pm

how about this:
Agar's research demonstrated that fALS is caused by two synergistic properties of the protein superoxide dismutase, creating toxic levels of the protein in motor neurons. "We discovered that increased protein unfolding and the propensity of the proteins to aggregate, (to clump together) are the major factors in the familial form of ALS," explained Agar.

www.sciencedaily.com/releases/2008/07/080728215336.htm

Could impaired removal of toxins due to CCSVI-related poor blood flow and all functions of blood flow not being performed properly (oxygenation, glucose, and toxin removal) contribute to these proteins building to toxic levels, in conjunction with this genetic weakness?

Cheer is right about neurons once degenerating in ALS being a process that may not be able to be stopped, even if any originally promoting conditions like CCSVI were treated.

If CCSVI treatment needs to be done preventatively, then anyone who has ALS running in their family might benefit from being checked for CCSVI even in the absence of neurological symptoms.
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