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

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

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

Postby sara-sama » Sun Dec 26, 2010 4:53 pm

Hi , ..

I wonder why Als lack of interest with that they have ccsvi ..!!
Is it because the narrow a result of Als, not a cause such as Ms , or it is truly causing Als but with other unknown reasons ..?
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Postby Cece » Sun Dec 26, 2010 9:39 pm

If there is a benefit in CCSVI treatment for people with ALS, how wonderful that would be.

The ISNVD (International Society of Neurovascular Diseases) may be starting off with a focus on CCSVI in MS, but success and expansion are likely in its future. Parkinsons, Alzheimer's, ALS...imagine if there are more break-throughs around the corner....
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Postby scorpion » Mon Dec 27, 2010 7:25 am

Cece wrote:If there is a benefit in CCSVI treatment for people with ALS, how wonderful that would be.

The ISNVD (International Society of Neurovascular Diseases) may be starting off with a focus on CCSVI in MS, but success and expansion are likely in its future. Parkinsons, Alzheimer's, ALS...imagine if there are more break-throughs around the corner....


Sounds like every single illness experienced and conceived by human beings may now be linked to the vascular system. 8O
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Postby sara-sama » Mon Dec 27, 2010 7:30 am

Some doctors refuse to carry out the catheter for patients with Als, while they agree for patients with Ms ..!!
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Postby sara-sama » Mon Dec 27, 2010 7:36 am

scorpion wrote:
Cece wrote:If there is a benefit in CCSVI treatment for people with ALS, how wonderful that would be.

The ISNVD (International Society of Neurovascular Diseases) may be starting off with a focus on CCSVI in MS, but success and expansion are likely in its future. Parkinsons, Alzheimer's, ALS...imagine if there are more break-throughs around the corner....


Sounds like every single illness experienced and conceived by human beings may now be linked to the vascular system. 8O


It is the truth ...
I know 1 man and 3 women with als have ccsvi .
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Postby L » Mon Dec 27, 2010 7:42 am

scorpion wrote:
Cece wrote:If there is a benefit in CCSVI treatment for people with ALS, how wonderful that would be.

The ISNVD (International Society of Neurovascular Diseases) may be starting off with a focus on CCSVI in MS, but success and expansion are likely in its future. Parkinsons, Alzheimer's, ALS...imagine if there are more break-throughs around the corner....


Sounds like every single illness experienced and conceived by human beings may now be linked to the vascular system. 8O


Great news isn't it?
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Postby Lyon » Mon Dec 27, 2010 8:30 am

.
Last edited by Lyon on Sun Nov 20, 2011 4:47 pm, edited 1 time in total.
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Postby L » Mon Dec 27, 2010 8:52 am

Lyon wrote:
L wrote:
scorpion wrote:
Cece wrote:If there is a benefit in CCSVI treatment for people with ALS, how wonderful that would be.

The ISNVD (International Society of Neurovascular Diseases) may be starting off with a focus on CCSVI in MS, but success and expansion are likely in its future. Parkinsons, Alzheimer's, ALS...imagine if there are more break-throughs around the corner....


Sounds like every single illness experienced and conceived by human beings may now be linked to the vascular system. 8O


Great news isn't it?
But the great Zamboni, inventor of all that's wonderful, came to the conclusion that CCSVI ISN"T involved in other neurological ailments?

So basically, isn't this is all a matter of picking and choosing what we want? :wink:


Sara-Sama reported in Dr Sclafani's thread that her sister, who has ALS, was diagnosed with CCSVI and subsequently treated with very positive results. So we're hoping that there is a connection. Not so much picking and choosing as greeting good news. Of course, we don't need anyone to point out that clinical trials will be necessary to prove or disprove any positive results but since this appears to be your hobby you probably will do just that all the same.

I wonder to myself, why is Scorpion rarely posting in the Stem Cells forum, why is Lyon rarely posing in the Revimmune forum? And then I remember that CCSVI treatment is one has provided us with hundreds of anecdotal success stories.

The possibility that ALS, or the symptoms of ALS, may also be treated with venoplasty, regardless of Zamboni's views, is a good thing, no?

I always say to myself, this is the last time that I will enter into this empty cyclical argument but I can never help myself. Someone once suggested, I think that it may have been one eye, that you, Lyon, just write a signature outlining the basic points regarding your scepticism and you could just make an empty post now and again with much the same effect. I thought that was a really great idea.
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Postby Cece » Mon Dec 27, 2010 9:07 am

sara-sama wrote:It is the truth ...
I know 1 man and 3 women with als have ccsvi .

That's big news, sara-sama, do you know if they were reliably diagnosed by an experienced CCSVI doctor? If you look at CCSVI as a separate disorder, it might set the stage for things getting into the central nervous system that shouldn't be there. And then depending on how the body reacts to those things, perhaps the most likely outcome is long chronic MS but perhaps other outcomes are possible too, including other neurological disorders. I am not saying we have the answers, we barely even have the questions yet!

I also know next to nothing about ALS, other than that it is particularly bad. Has it been believed to be autoimmune?
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Postby fernando » Mon Dec 27, 2010 9:25 am

One doctor involved in CCSVI treatment, several treated patients and me got together a few nights ago.

One patient has Parkinson and another ALS (and the rest have MS).

Both of them reported more energy. The ALS patient reported no progression also during the month following the procedure. Obviously those are personal experiences, and I really mean it.

L,

It was me who told Lyon about the signature thing :D
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Postby sara-sama » Mon Dec 27, 2010 9:57 am

Cece wrote:
sara-sama wrote:It is the truth ...
I know 1 man and 3 women with als have ccsvi .

That's big news, sara-sama, do you know if they were reliably diagnosed by an experienced CCSVI doctor? If you look at CCSVI as a separate disorder, it might set the stage for things getting into the central nervous system that shouldn't be there. And then depending on how the body reacts to those things, perhaps the most likely outcome is long chronic MS but perhaps other outcomes are possible too, including other neurological disorders. I am not saying we have the answers, we barely even have the questions yet!

I also know next to nothing about ALS, other than that it is particularly bad. Has it been believed to be autoimmune?


They are friends in another forum but we split up after closing ccsvi forum ..
All I know that Dr. Sinan who was Conducted the ultrasound examination for two of them add to my sister..
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Postby L » Mon Dec 27, 2010 10:14 am

fernando wrote:It was me who told Lyon about the signature thing :D



Apologies! Credit where credit´s due, a great time saving idea that. Lyon wouldn´t have to work out individually tailored sequences of the same words and we wouldn´t have to be bothered reading them.
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Postby L » Mon Dec 27, 2010 10:16 am

sara-sama wrote:They are friends in another forum but we split up after closing ccsvi forum ..
All I know that Dr. Sinan who was Conducted the ultrasound examination for two of them add to my sister..



Was that on an old CCSVI Egypt Facebook page that suddenly disappeared?

I was treated by Dr Sinan too. He's a great doctor!
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Postby Cece » Mon Dec 27, 2010 10:50 pm

I'm a fan of Dr. Sinan - yes, he counts as an experienced CCSVI doc!
J Neurol Sci. 1996 Dec;144(1-2):64-9.
Local cerebral blood flow in motor neuron disease: correlation with clinical findings.
Kobari M, Obara K, Watanabe S, Dembo T, Fukuuchi Y.

Abstract
Local cerebral blood flow (CBF) measured by xenon-enhanced CT was correlated with the clinical findings in 21 patients with motor neuron disease (mean +/- SD age, 60 +/- 10 years). In 11 patients, CBF was also measured after intravenous injection of 2 mg thyrotropin releasing hormone (TRH). There were no significant differences in CBF of the cerebral cortex, basal ganglia, thalamus, and subcortical white matter with respect to age, duration of illness, or presence (n = 9) or absence (n = 12) of bulbar palsy. In patients with upper motor neuron disturbance (n = 10), however, local CBF in the frontal cortex was significantly lower (p < 0.05) than in those without it (n = 11). Within the frontal cortex, CBF reduction was marked in the upper posterolateral part (p < 0.05) that included the motor and premotor areas. Intravenous administration of TRH did not significantly alter the local CBF in any of the brain regions examined. An additional patient with motor neuron disease and severe dementia showed marked CBF reduction in the frontal lobe, which was in common with but much greater than the reduction in those exhibiting subcortical dementia (e.g., progressive supranuclear palsy). We conclude that in motor neuron disease patients with upper motor neuron involvement, the selective reduction of CBF in brain regions that include primary motor and premotor areas may reflect functional disturbance or neuronal degeneration in these regions. The ameliorating effect of TRH in patients with motor neuron disease, if any, appears not to be related to increases in local CBF or activation of brain function.

PubMed


J Neurol Sci. 1992 Jan;107(1):19-28.
Focal reductions of cerebral blood flow in amyotrophic lateral sclerosis: a [99mTc]-d,l-HMPAO SPECT study.
Waldemar G, Vorstrup S, Jensen TS, Johnsen A, Boysen G.

Abstract
We investigated regional cerebral blood flow (rCBF) using the [99mTc]-d,l-HMPAO technique with brain dedicated high resolution single photon emission computer tomography (SPECT) in 14 consecutive patients with amyotrophic lateral sclerosis (ALS), median age 62 years (45-77). Global CBF, expressed in % relative to the cerebellum, was significantly lower (P less than 0.05) in the ALS group (80.5 +/- 6.7%) than in the control group of 14 age-matched healthy volunteers (87.0 +/- 7.5%). Eight patients (57%) had abnormal rCBF distribution maps with reduced flow, primarily in the frontal lobes. Three of the 8 patients with abnormal rCBF had mild to moderate dementia and another one had mild aphasia. None of the patients with normal rCBF distribution maps had dementia. In the group of ALS patients as a whole rCBF was significantly reduced in the frontal cortex, the hippocampus, and the central white matter. We conclude that reduced rCBF, primarily in the frontal lobes, is a frequent finding in patients with ALS. The decreased rCBF may be associated with cognitive deficits and is most likely caused by neuronal degeneration and reduced metabolic needs.

PubMed


Rinsho Shinkeigaku. 1992 Jan;32(1):57-61.
A case of motor neuron disease with dementia--cerebral blood flow and cerebral oxygen metabolism
Kitamura S, Taji N, Komiyama T, Sakayori O, Terashi A.

Abstract
A 51-year-old man developed muscle weakness of the bilateral upper extremities, and mental changes beginning with personality change. There was no history of mental illness in his family. A neurological examination 1 year after the onset revealed muscle atrophy and fasciculation of his bilateral upper extremities Neuropsychological examination revealed concrete speech, paraphasia, and lack of judgment. Disorientation, amnesia, dyscalculia, and spatial agnosia, however, were not recognized. These neuropsychological findings were compatible with dementia of frontal lobe type. EMG and muscle biopsy revealed neurogenic muscular atrophy. There was no abnormal findings in the brain X-CT and the brain MRI. PET study using C15O2 and 15O2 revealed reduction of cerebral blood flow (CBF) and cerebral metabolic rate of oxygen (CMRO2) in the bilateral medial frontal cortex, the left temporal cortex and the bilateral thalamus. From these these findings the patient was diagnosed as having motor neuron disease with dementia. Muscle atrophy and dementia worsened gradually. A second PET study 2 years and 6 months after the onset revealed severe reduction of CBF and CMRO2 in the bilateral temporal cortex and the thalamus. These PET findings suggested that dysfunction of the temporal cortex and the thalamus related to dementia in this case.
Neurology. 2010 Mar 9;74(10):821-7. Epub 2010 Feb 10.
Gray matter perfusion correlates with disease severity in ALS.
Rule RR, Schuff N, Miller RG, Weiner MW.

Abstract
OBJECTIVE: The goal of this study is to determine if regional brain perfusion, as measured by arterial spin labeling (ASL) MRI, is correlated with clinical measures of amyotrophic lateral sclerosis (ALS) disease severity. The presence of such a relationship would indicate a possible role for ASL perfusion as a marker of disease severity and upper motor neuron involvement in ALS.
METHODS: Disease severity was assessed in 16 subjects with ALS (age 54 +/- 11) using the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS) and the pulmonary function measure, forced vital capacity (FVC). Upper motor neuron involvement was assessed by testing rapid tapping of the fingers and feet. Magnetic resonance perfusion images were coregistered with structural T1-weighted MRI, corrected for partial volume effects using the structural images and normalized to a study-specific atlas. Correlations between perfusion and ALS disease severity were analyzed, using statistical parametric mapping, and including age as a factor. Analyses were adjusted for multiple clusters. Result: ALS severity, as measured by the ALSFRS and FVC, was correlated with gray matter perfusion. This correlation was predominantly observed in the hemisphere contralateral to the more affected limbs. ALSFRS scores correlated with perfusion in the contralateral frontal and parietal lobe (p < 0.001) and ipsilateral frontal lobe (p < 0.02). FVC scores correlated with gray matter perfusion in contralateral frontal lobe (p < 0.001). Upper motor neuron involvement, as measured by rapid finger tapping, correlated bilaterally with perfusion in the middle cingulate gyrus (p < 0.001).
CONCLUSION: Amyotrophic lateral sclerosis (ALS) severity is correlated with brain perfusion as measured by arterial spin labeling (ASL) perfusion. This correlation appears to be independent of brain atrophy. ASL perfusion may be a useful tool for monitoring disease progression and assessing treatment effects in ALS.

Regional cerebral perfusion deficits in ALS.
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Postby sara-sama » Thu Feb 03, 2011 5:37 pm

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
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