From Arlene Pellar Hubbard

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

From Arlene Pellar Hubbard

Postby dania » Fri Jul 13, 2012 11:12 am

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Re: From Arlene Pellar Hubbard

Postby DougL » Fri Jul 13, 2012 12:04 pm

The dysfunction of the blood brain barrier (BBB) appeared as a result of CCSVI can also be one of the main reasons for triggering of neurodegenerative or autoimmune processes in MS.
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Re: From Arlene Pellar Hubbard

Postby Cece » Fri Jul 13, 2012 1:34 pm

Chronic cerebrospinal venous insufficiency in amyotrophic lateral sclerosis

Grozdinski L. 1, Petrov I. 2, Iloska M. 1

1 Angiology and Phlebology Sector, Clinic of Cardiology and Angiology, Tokuda Hospital, Sofia, Bulgaria;
2 Clinic of Cardiology and Angiology, Tokuda Hospital, Sofia, Bulgaria

Aim. CCSVI probably is not only a risk factor for development of MS, but it is the basic ethiopathogenetical factor. The dysfunction of the blood brain barrier (BBB) appeared as a result of CCSVI can also be one of the main reasons for triggering of neurodegenerative or autoimmune processes in MS. Following this hypothesis we can assume that CCSVI is the main ethiopathogenetic factor in other neurodegenerative diseases such as amyotrophic lateral sclerosis (ALS). Up to this moment the literature has no data for Doppler or Venography examination for CCSVI in patients with ASL. The aim of this research is screening of ALS patients for CCSVI using EchoDoppler and venography.

Methods. Seven patients with ALS were examined.

Results. The patients diagnose was confirmed based on clinical symptoms and electromyography. Both jugular vein (draining the blood from the brain) and the azygos vein (draining the blood from the spinal cord) were examined by EchoDoppler and venography. In all of the patients with ALS CCSVI was determined- severe stenosis in jugular veins. In five of the patients was determined severe stenosis in the azygos vein. In all of our patients endovascular therapy was performed- balloon dilatation of jugular and azygos vein with good angiographic result- normal blood flow and diameter of the veins.

Conclusion. The discovery of CCSVI in seven patients with ALS is probably not a coincidence and raises the necessity of conduction of a systematic research for CCSVI in of patients with ALS.

language: English

Probably not a coincidence.
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Re: From Arlene Pellar Hubbard

Postby Billmeik » Fri Jul 13, 2012 4:03 pm

so how do the 7 feel?
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Re: From Arlene Pellar Hubbard

Postby Cece » Fri Jul 13, 2012 4:18 pm

•About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
http://www.alsa.org/about-als/facts-you ... -know.html

Follow-up for this study would be good to know but I am not optimistic. Eighty percent of patients with ALS pass away within five years of diagnosis. If CCSVI can promote both diseases, I will take my MS over ALS anyday.

There was a poster here at TiMS whose sister had ALS and was treated for CCSVI with some reversal of symptoms, but it did not last and she has passed away. I don't know if there has been a success story with ALS yet and if so I don't know if we can credit the CCSVI treatment if a small percentage of people with ALS have unexpectedly long lifespans even after diagnosis.
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Re: From Arlene Pellar Hubbard

Postby Rosegirl » Sat Jul 14, 2012 5:09 am

My mom had ALS. I have MS. The neurologists always said there was no connection.
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Re: From Arlene Pellar Hubbard

Postby dania » Sat Jul 14, 2012 6:00 am

Yup! My dad had Hodgkin's Lymphoma, died in1967, My sister was diagnosed with Hodgkin's in 1972. Doctors then said it was a one in a million that she had it too. I was diagnosed with it in 1992. And I had a second cousin that die from it, a few years back at the "ripe" old age of 25. NOW, doctors admit there is a genetic link. DUH!!!!!!!!!!!!!!
I am not saying there is a genetic link to MS. Only pointing out how most doctors seem to see things either black or white.
I always said ALS is like MS, only much faster.
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Re: From Arlene Pellar Hubbard

Postby tzootsi » Sat Jul 14, 2012 7:41 am

I wonder if Steven Hawking, one of the world's most brilliant scientists and an ALS patient, is aware of the possible link between ALS and CCSVI.
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Re: From Arlene Pellar Hubbard

Postby Ellegaard » Mon Jul 16, 2012 2:04 am

Cece wrote:
Chronic cerebrospinal venous insufficiency in amyotrophic lateral sclerosis

Grozdinski L. 1, Petrov I. 2, Iloska M. 1

1 Angiology and Phlebology Sector, Clinic of Cardiology and Angiology, Tokuda Hospital, Sofia, Bulgaria;
2 Clinic of Cardiology and Angiology, Tokuda Hospital, Sofia, Bulgaria

Aim. CCSVI probably is not only a risk factor for development of MS, but it is the basic ethiopathogenetical factor. The dysfunction of the blood brain barrier (BBB) appeared as a result of CCSVI can also be one of the main reasons for triggering of neurodegenerative or autoimmune processes in MS. Following this hypothesis we can assume that CCSVI is the main ethiopathogenetic factor in other neurodegenerative diseases such as amyotrophic lateral sclerosis (ALS). Up to this moment the literature has no data for Doppler or Venography examination for CCSVI in patients with ASL. The aim of this research is screening of ALS patients for CCSVI using EchoDoppler and venography.

Methods. Seven patients with ALS were examined.

Results. The patients diagnose was confirmed based on clinical symptoms and electromyography. Both jugular vein (draining the blood from the brain) and the azygos vein (draining the blood from the spinal cord) were examined by EchoDoppler and venography. In all of the patients with ALS CCSVI was determined- severe stenosis in jugular veins. In five of the patients was determined severe stenosis in the azygos vein. In all of our patients endovascular therapy was performed- balloon dilatation of jugular and azygos vein with good angiographic result- normal blood flow and diameter of the veins.

Conclusion. The discovery of CCSVI in seven patients with ALS is probably not a coincidence and raises the necessity of conduction of a systematic research for CCSVI in of patients with ALS.

language: English

Probably not a coincidence.


No it is not a coincidence. I'm pretty sure that ALS is more or less the same disease as PPMS only much faster.
I will put all my money on, that ALS Patients will need a reconstruction of the veins. To get a lasting result.
I'm sure that ALS Patients have severe dysfonctionnel veins, this might be due to compression of the veins or many dysfonctionnel valves, in a row.
i don't think you can expect a good result from angioplasty, if you have veins that need treatment over 14 cm. Right me if i am wrong on this one!

BTW what is this about people with ALS is being told(Bye Neuros) that angioplasty is a great risk to their health??? WTF.
They have a Dead sentence on paper already, and the last year of their lives, they are barely alive. I don’t se they have that much to lose!!!
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Re: From Arlene Pellar Hubbard

Postby cheerleader » Mon Jul 16, 2012 7:31 am

Dr. Dake looked at CCSVI in an ALS patient back in 2009. He treated the patient, but the decline continued. Neuronal loss did not stop--this is due to Wallerian degeneration, and a continuation of programmed cell death. Like a forest fire which grows out of control, the message to die is passed from neuron to neuron. Perhaps prevention and early intervention might stop the disease process. I still have a dream that someday cerebral blood flow will be routinely tested in chlidren and volume in and out will be part of a yearly physical exam, like blood pressure and blood sugar. Someday.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: From Arlene Pellar Hubbard

Postby Ellegaard » Mon Jul 16, 2012 7:56 am

cheerleader wrote:Dr. Dake looked at CCSVI in an ALS patient back in 2009. He treated the patient, but the decline continued. Neuronal loss did not stop--this is due to Wallerian degeneration, and a continuation of programmed cell death. Like a forest fire which grows out of control, the message to die is passed from neuron to neuron. Perhaps prevention and early intervention might stop the disease process. I still have a dream that someday cerebral blood flow will be routinely tested in chlidren and volume in and out will be part of a yearly physical exam, like blood pressure and blood sugar. Someday.
cheer


I hope not. There have been chases with reportet improvement, then after a month or so its back to basic/Restenose.
Angioplasty for ALS Patients need to be followed up weekly. But i am pretty sure that the Non functionel veins need to be replaced.
To gain a lasting result. But i´m convinced that ALS Patients will take matters in there own hand, they do not have any time to waste, not at all.
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Re: From Arlene Pellar Hubbard

Postby LR1234 » Mon Jul 16, 2012 8:11 am

How do you check cerebral blood flow reliably without and invasive test?
My dr is suggesting I have a PET scan??? Does anyone know how this works and what info it gives??? (I have had many MRV's which don't give enough info as well as CT scans)
Thanks
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Re: From Arlene Pellar Hubbard

Postby cheerleader » Mon Jul 16, 2012 11:08 am

LR1234 wrote:How do you check cerebral blood flow reliably without and invasive test?
My dr is suggesting I have a PET scan??? Does anyone know how this works and what info it gives??? (I have had many MRV's which don't give enough info as well as CT scans)
Thanks

Hi LR--
PET scans are the current "gold standard" for cerebral blood flow (CBF) measurements, but it has drawbacks--namely the dye.

Positron emission tomography (PET) is capable of providing in vivo quantitative measures of CBF and has evolved to be considered the gold standard for studying cerebral hemodynamics. However, PET imaging involves the injection of radioactive tracers, which limits its repeatability and application in healthy volunteers. Among other limitations are low temporal and spatial resolution, low signal-to-noise ratio (SNR), as well as the requirement for a cyclotron. Thus, magnetic resonance (MR) perfusion imaging, being widely available and having relatively high spatial and temporal resolution, is increasingly seen as an attractive alternative to PET.

http://www.hindawi.com/journals/ijbi/2008/516359/

As far as ALS restenosing...if the body is not able to move, or keep cardiovascular circulation, the veins simply won't stay open. And repeated venoplasty or stenting won't help. Dr. Dake has seen that his original CCSVI patients who exercise daily maintain their venous health and do not restenose....now three years later. Vigorous exercise is being linked to neurodegenerative disease prevention every day. If you can move, just do it.
http://abcnews.go.com/Health/Alzheimers ... AROlo5iZgs
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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