PARKINSON'S LINK TO CCSVI

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

Postby fee001 » Tue Aug 16, 2011 8:09 pm

Hi!

There is no need for a seperate board re Atlas, Info on it should be available in general to all and not segregated/

You see I believe and know 100% in my casw that is my only problem, which has had such an influence on my function and mobility potraying all symptoms indicative to ms.

No I cant prove it yet, but I intend to. It has been a series of tiny improvements, which has built up over the months to mean that my upper bidy strength is slowly but surely returning. I can di things like hang my washing on the airer, although sitting in my chair so so much easier. I can now make my son some nice bacon rolls, something that I could not have done several weeks ago. He's happy and I am too.

By the way I dont gripe, I just say it as it is. Hey I spent too many years keeping my mouth shut, keeping the peace so to speak. But now divorced can stop walking on those eggshells. Happy happy happy,

This is for CESE I dont doubt ccsvi exists but lets not let it distract others from the bigger picture here. I dont want to confuse people especially new visitors with both issues. let people weigh up the pros and cons by themselves. My intention is to rationally inform, thus then giving them the oportunityto make up their own minds. There is a whole board with ample info on it it if they wish to gleen info on that subject.

For you and me Cese we have to agree to disagree. ok
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Postby AlmostClever » Tue Aug 16, 2011 8:17 pm

scorpion wrote:Civickiller said:
all might be straight but the muscles holding the atlas in place want to pull it back to its spot it was before, thats why ive been seeing a ucc dr for 8 months already, slowly my atlas is slowly pulling less out of alignment.



Hmmm I have an Atlas downstairs in my library and surprisingly it did contain information on MS but I can not figure out how knowing Jackson is the largest city in MS will provide me any bit of relief from some of these darn symptoms! :?


Hey Scorpion,

Did it have anything on Lyme?

Thx!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Cece » Tue Aug 16, 2011 8:34 pm

This is for CESE I dont doubt ccsvi exists but lets not let it distract others from the bigger picture here. I dont want to confuse people especially new visitors with both issues.

You do not want CCSVI to distract people from the bigger picture, here in the CCSVI subforum....

The upper cervical care subforum idea is a pretty good idea, I think. It might raise the awareness to people with MS, not just the CCSVI crowd, by getting it out on the main forum page.

As for disagreeing on agreeing, it's because of the misinformation being shared. The idea that the Atlas causes all CCSVI is misinformation, if it cannot be contested that malformed valves are the most common presentation of CCSVI and there is no way for the Atlas to malform valves.
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Postby fee001 » Wed Aug 17, 2011 12:48 am

Almostclever


I have never looked at the link between Lyme and blood flow, if you have come across a good website will you let me know and I'll post it on my blog yeah. That is really interesting.


Fiona
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Postby fee001 » Wed Aug 17, 2011 1:43 am

Almostclever

I was searching blood flow and lyme and following came up, its a canadian site, have posted on my blog address is on there ok and whole article




Fibromyalgia, Chronic Fatigue Syndrome and Lyme Disease
by Bonnie Gorman RN


Dr Sam Donta presented a comprehensive, compassionate, cutting-edge lecture to Mass. CFIDS/FM Association members on November 3rd, 2002. His topic was "The Interface of Lyme Disease with CFS and FM: Diagnostic and Treatment Issues." Dr. Donta is a nationally recognized expert on Lyme disease. He is the Director of the Lyme Disease Unit at Boston Medical Center and a Professor of Medicine at BU Medical School. He is a bacteriologist and an infectious disease specialist, who views CFS and FM from that vantage point. He is also a consultant to the National Institutes of Health (NIH), and presented at NIH's scientific meetings on CFS research.


What does Lyme disease have to do with CFS and FM you might be asking? Some people believe that Lyme disease may be one of the causative factors in both CFS and FM. Others believe that some CFS and FM patients are really misdiagnosed chronic Lyme disease patients and vice versa. Some believe that there is no such thing as chronic Lyme disease, instead these patients actually have CFS or FM. We asked Dr. Donta to help sort all this out.
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Postby Cece » Wed Aug 17, 2011 12:13 pm

I ran across this patient report. It's a gentleman with Parkinson's who was treated for CCSVI in Italy. He had 4 out of 5 Zamboni criteria, including a fully blocked right jugular.

http://neurotalk.psychcentral.com/thread152132.html
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Postby cheerleader » Wed Aug 17, 2011 5:17 pm

Cece wrote:I ran across this patient report. It's a gentleman with Parkinson's who was treated for CCSVI in Italy. He had 4 out of 5 Zamboni criteria, including a fully blocked right jugular.

http://neurotalk.psychcentral.com/thread152132.html


Thanks for the link, Cece. As this gentleman reports, and from others I've heard report w/ALS, Parkinsons, and other neurodegenerative disease, there is not much help from venoplasty. Dr. Zamboni was very specific that it was only MS he found with his specific definition of CCSVI. He found truncular venous malformations in pwMS--including atresia, webs, hypoplasic veins and inverted valves. He did not find this in other diseases. I do not see how Lyme, or Parkinson's or a misaligned atlas could create a genetic venous malformation. These topics are not truly about CCSVI as defined by Dr. Zamboni. They may create venous congestion or hypoperfusion of some sort, but it is not CCSVI.

Since Dr. Zamboni discovered CCSVI, I believe he is the expert on this topic.

I'd be very wary of other doctors taking his discovery and applying to other diseases before the research is completed. And he says the same thing. Remember, Dr. Zamboni had been studying this phenomena for several years, and has many papers on the topic. Caveat emptor.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby fee001 » Thu Aug 18, 2011 11:22 am

[quote="civickiller"]all might be straight but the muscles holding the atlas in place want to pull it back to its spot it was before, thats why ive been seeing a ucc dr for 8 months already, slowly my atlas is slowly pulling less out of alignment.

after my first couple adjustments i felt normal, i still had to walk with a cane but improved walking, no heat sensitivity, idk if it was increased blood pressure or less nerve pressure[/quote]
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Postby fee001 » Thu Aug 18, 2011 11:29 am

Hi!

Sorry I was just playing with the quote thingy, obviously got it wrong buthey! I'm learning.

Anyway civickiller, I didnt realise about muscles pulling Atlas back, I kept wondering why he did the head thing now and again, I just lay there and have never asked him. I feel a right Numpty now, but will mention it to John on my next visit.

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Postby civickiller » Thu Aug 18, 2011 12:43 pm

Im the kind of guy that hates doing thing without understanding it, i asked my UCC Dr. alot of questions

fee001 wrote:I kept wondering why he did the head thing now and again, but will mention it to John on my next visit.



idk what you mean by "head thing"? is Jon your UCC Dr.?
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Postby fee001 » Thu Aug 18, 2011 1:45 pm

Civickiller

What does idk mean (i just got it) I don't know, yeah!

Yes John is my chiro. And I do talk constantly about stuff, but not about me personally.


I find Chinese medicine and their attitudes of Mind Body and Spirit thing so powerful.

Saw physio 2day 4 acupuncture we tried sciatica points today, neck and knee as my knee is sore.

now interestingly my lower back pain has virtually gone. I knew my burning sore pain was down to the nerve that exits the lower spine and goes down each leg.

I also learned the differences between an anti inflamatiory which is not a paiunkiller, and I have been taking it and it has had no effect. when what I should have been taking is paracetamol.

You see here I go again, I love to learn about my body and its reactions, weird 'cause I hated biology at school.

I didnt hate school, just didnt learn much probably too busy talking eh!

I'll go and let your ears rest now

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Postby NZer1 » Tue Aug 23, 2011 1:00 am

NCS ~ The National C.C.S.V.I. Society
Four Parkinson's patients were recently treated for CCSVI and their curled up hands and swallowing improved immediately. Our Sept 10 conference will present data on dozens more...
https://www.facebook.com/nationalccsvisociety
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Postby civickiller » Tue Aug 23, 2011 6:30 am

Fiona,

Ive had lower back pain for at least 10 years, i attributed it to lifting weights but after my first adjustment eliminated my lower back pain, i was a believer, it also eliminated my heat sensitivity till my atlas went out of alignment
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Postby fee001 » Tue Aug 23, 2011 8:27 am

Civickiller,

Why can you not walk?
Are you hips or pelvis wonky
Is your lowerback pain a burning soreness


Fiona
I do my own research, and find my own answers Its good to talk
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Re: PARKINSON'S LINK TO CCSVI

Postby Cece » Thu Jan 26, 2012 7:16 pm

Not sure where to put this. This thread has some info about Parkinsons and Lyme, so here goes. Dr. Arata posted these comments on his facebook page recently:
http://www.facebook.com/Dr.Arata
It's almost two years now treating CCSVI and it still amazes me.

Saw a patient in follow up this morning have Parkinson's as their neurodegenerative disorder. Astounding response in strength and mobility

He treated a Parkinson's patient, with astounding results.
Lyme is the second most common comorbidity diagnosis after MS that we see. The effects of CCSVI treatment appears to be even more prominent than that seen with MS in my experience

He's treated Lyme patients, and they tend to respond to the procedure even better than MS patients.
Remember we are treating CCSVI. That is the disease not MS, Lyme Parkinson's etc. Therefore the symptoms, anatomy and treatment do not change.

I am not sure what he means by the symptoms, anatomy, and treatment do not change. But I agree about them treating CCSVI, not MS. A vascular specialist cannot treat a neurological disorder, but they can treat a vascular disorder.

edit: do you think he means that whether a patient has MS, Lymes, or Parkinsons, etc, their CCSVI all presents about the same, with outflow obstructions primarily of the jugular valves?
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