CCSVI's link to other neurological disorders

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

CCSVI's link to other neurological disorders

Postby kfreeman » Mon Dec 07, 2009 9:49 am

I am the mom of a 7yr old boy with autism. The symptoms he has are so similar to MS that I am compelled to find out if in fact these symptoms are causeed by vascular problems. I have been on every forum and called every scientist I can to get them to open their eyes about this treatment and how it may help those with autism as well as with MS. I can't tell you how many parents I have communicated with who have MS and either have a child or grandchild with autism. These disorders have been treated by low dose naltrexone, steroids, hbot, stem cells and have such similar symptoms. Someone please point me in the right direction. Dr. Zamboni is unreachable and all others have said is that it will take time.
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Postby Merlyn » Mon Dec 07, 2009 11:17 am

Dr. Roy Swank (now deceased) wondered why so many people with MS had autistic children. As far as trying to find out whether autistic children have vascular issues, this research into MS is so new I don't know that you will have much response. However, you might want to check ferritin levels and see what that shows.
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Postby Shannon » Mon Dec 07, 2009 11:50 am

Did anyone else see a few years back there was a study that possibly linked schizophrenia with MS? The were finding that studies done during autopsy of schizophrenic patients showed similar glial cell damage and oligoclonal banding similar to MS. It would also corroborate with the age of onset.

I am curious because my paternal grandfather was schizophrenic, and I began to wonder about it. Perhaps he also had CCSVI?
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Postby cheerleader » Mon Dec 07, 2009 12:10 pm

Kfreeman-
Dr. Zamboni only found this specific type of venous blockage in MS patients- not in controls or other neurological disease. It is a very specific location for blockage in the jugular and azygos veins and causes reflux of blood back into brain tissue, creating damage to gray matter and subsequent lesions in white matter. Autistic brains do not show this type of damage. That said, my heart goes out to you. If I was a parent of an autistic child, I'd be searching for answers, too. I wish you all the best in your search, and hope and health for your family-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby kfreeman » Mon Dec 07, 2009 4:23 pm

I saw the study with the mention of 'other subjects with neurological conditions' but did not see any mention of autism. Autism is different than other conditions such as retardation, cerebral palsy, downs, etc. It has it's own make up - it's own criteria. However, even if there were subjects with autism that were used I would still pursue this avenue as my son has OBVIOUS signs of lack of blood flow. I'm not saying it is in the same place where dr. z found ms patients had their problems. I am saying that there are numerous of studies showing lack of blood flow in subjects with autism. As well, the superior olive and the cerebellum are fed from arteries and if, in fact, they were affected by lack of flow from these arteries that would expain why those with autism have lack of development in specific areas of brain function.

Don't get me wrong, I know it's a long shot but no one has given any better ideas as of yet.
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Postby SammyJo » Mon Dec 07, 2009 4:41 pm

I'm in touch with many Parkinson's patients because of the benefit they get from LDN too. One is already working on getting their venous structure examined, another is doing research on iron deposits found during autopsies of PD, and says there are many studies that find this to be the case. I will keep everyone posted on this. I would not close the book yet on other diseases having a relationship to ccsvi.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby kfreeman » Mon Dec 07, 2009 4:58 pm

All I can report about is my own experience with my son. His facial coloring is that of a chemo patient or drug addict. He is white, pasty, has fainted several times, has blue lips on many occasions, can't gain weight, has vestibular problems, sinus arithmia (irregular heartbeat), always cold, lethargic, virchow robbins spaces (like in ms), difficult birth (salmon patches on back of head), hiccuped multiple times a day - everyday of his life for the first 2.5 yrs, only has pink on the tip of his nose...My family has a history of vascular issues. My mom has had both neck arteries unclogged. So have most of my uncles.

Is there any proof that this is not a vascular problem?
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Postby kfreeman » Mon Dec 07, 2009 5:02 pm

Jacob's iron levels were extremely low. Now that he has been on iron supplements for 3 months his iron sky rocketed and he has even worse coloring and awareness. When he first started taking the iron his color was great and he was becoming more aware but then it wore off.
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Postby kfreeman » Mon Dec 07, 2009 5:54 pm

My son is having a doppler ultrasound on
Wednesday. What are the next steps to confirming or elimating this as a cause?
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Postby Rokkit » Mon Dec 07, 2009 6:08 pm

kfreeman, make sure whoever is doing the ultrasound is well-schooled on the Zamboni method. Unless the technician is properly trained for CCSVI specifically, they are not likely to identify this type of venous obstruction. You can find many posts on TIMS about that problem.
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Postby Rokkit » Mon Dec 07, 2009 6:13 pm

kfreeman wrote:What are the next steps to confirming or elimating this as a cause?


The other thing is, even if reflux/stenosis is found, no one can tell you if this is a cause since so far nothing has been proven. Current mainstream medicine believes that jugular stenoses do not cause problems because the body develops collateral veins.
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Postby kfreeman » Mon Dec 07, 2009 6:23 pm

they're idiots! dr. haacke has volunteered to look over the SWI data (if I can ever get one here!) for Jacob...they're must be some more vascular drs out there that are excited about this news and are preparing to do more research? so is there evidence about the stenosis forming collateral veins?
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Postby Rokkit » Mon Dec 07, 2009 6:27 pm

kfreeman wrote:so is there evidence about the stenosis forming collateral veins?


This is the longest thread in the world, but you really need to start with it:

http://www.thisisms.com/ftopict-6488.html
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Postby kfreeman » Mon Dec 07, 2009 6:54 pm

So here are the neuro. disorders used in the study:

As controls, we investigated 235 subjects subdivided as follows:

1.60 healthy subjects matched for age and gender with MS patients (HM-C).

2.82 healthy subjects older than the median age of onset of CDMS (HA-C);21 had haemodynamic anomalies been present in the second control group, we would not have been able to maintain that they have a role in MS, since the disease is not more expected in this age category.

3.45 patients affected by other neurological diseases (OND) (table 2); this group was composed of patients affected by neurodegenerative disorders (Parkinson disease and amyotrophic lateral sclerosis-ALS), other neuroimmunological disorders including myasthenia gravis and multifocal motor neuropathy (MMN), and cerebrovascular disease (ischaemic stroke, transient ischaemic attack (TIA)).

4.48 other controls not affected by neurological diseases (table 2), but scheduled for venography (HAV-C) for other pathologies: diagnostic sampling of the IJVs for primary/secondary hyperparathyroidism, varicocele and/or pelvic congestion syndrome, Cockett and thoracic outlet syndromes, indwelling central venous catheters or pacemaker wires, stenosis of venous access for haemodialysis and removal of temporary cava filters

No mention of autism spectrum disorders (asd)...
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spread ccsvi

Postby sbr487 » Thu Jan 14, 2010 10:58 pm

There have been quite a few posts that imply that ccsvi could be linked to alzheimer's, parkinson, scizophrenia etc. Can we post basic ccsvi info in forums meant for above? This would definitely bring more interest in ccsvi.
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