a change for the better?

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

Postby ozarkcanoer » Sat May 22, 2010 6:27 pm

The very last possible place I would want to learn about the cure for MS in the newspaper. Where is there a newspaper who gets their facts straight ? I mentioned a NYT science article about sleep medicine to my sleep specialist and she just laughed and said "where do you think they get their information ?". We will need to wait for more published papers in scientific journals that are peer reviewed. I hope we don't have to wait too long.

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Postby Lyon » Sat May 22, 2010 7:12 pm

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Last edited by Lyon on Mon Nov 21, 2011 2:55 pm, edited 1 time in total.
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Postby BooBear » Mon May 24, 2010 8:41 am

Frankly, this article gives me cause to celebrate!

"They're used to holding back information from the patients. And what's happening is they can't do that anymore."

How incredibly condescending.

WE WANT a discussion on CCSVI. Lots of discussion, in fact. We should be able to have an honest conversation with our neuro and not get poo-pooed or belittled or told the wrong facts about the treatments.

I noticed an interesting commonality on a few of the posts. When I brought up CCSVI to my neuro, he said two people died. I know I read at least two other posts with the same feedback. You know what he didn't discuss with me? Any of the scientific research. Or the success stories, or even the fact that CCSVI is real or not. First thing- two people died. Not only is it inaccurate to say that, but it is a clear scare tactic.

Because no one has died on the meds. Right.

I think the best evidence of "us vs. them" is the fact that articles are even written on the "us vs. them" topic. If we were all on the same team (and by all, I mean the patients and their caregivers and advocates, including neuros and the rest of the medical team), then our united voice should be screaming to look at these potential avenues very quickly.
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Postby concerned » Mon May 24, 2010 9:00 am

Wouldn't a neurologist have to know a thing or two about blood flow out and into the brain though?
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Postby BooBear » Mon May 24, 2010 9:09 am

A "thing or two", yes. I am not sure that qualifies them as vascular experts, though, any more than knowing a "thing or two" about the brain qualifies someone to be neurologist.
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Postby concerned » Mon May 24, 2010 9:21 am

actually i think that is an issue of utmost importance to neurologists.

the "know a thing or two" thing was not meant to be taken literally.

As you can see, from my "research" (or "google search")

http://www.google.ca/search?sourceid=navclient&aq=0h&oq=ne&ie=UTF-8&rlz=1T4ADBR_enCA269CA273&q=neurology+internal+jugular+vein
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Postby BooBear » Mon May 24, 2010 9:32 am

I did not mean for my comments to be interpreted that neurologists no nothing about the vascular system or its impact on neurological function. Rather, there is something to say about having an expertise.

Neurologists focus on far more than the vascular system, of course. And I would argue that vascular surgeons, IRs, et al, likely know more about the vascular system than most. They are each specialties.

The most interesting thing that I read in the google search you referenced were the number and age of articles with regard to IJV, blood flow and neurological impact. It's astonishing to see things from 1994 on IJV constriction and even reflux- from the same neurological research community that is not supporting CCSVI.
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Postby concerned » Mon May 24, 2010 9:34 am

But were the symptoms described those of MS?
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Postby BooBear » Mon May 24, 2010 9:40 am

But there is more to the issue than a symptomatic comparison, I think.

There is a disease, for example, called NBIA- Neurodegeneration with Brain Iron Accumulation. NBIA is a rare, inherited disorder characterized by progressive degeration of the nervous system (you guessed it- via excess iron in the brain). Many of the symptoms of NBIA mirror MS:

- Chloreathetosis (involuntary, jerky muscle movements)
- Muscle rigidity
- Spasticity
- Ataxia (inability to coordinate movements)
- Confusion
- Disorientation
- Painful muscle spasms
- Difficulty talking
- Poorly articulated speech
- Visual impairment

NBIA and MS are different diseases, to be certain. NBIA starts in childhood predominantly and is very aggressive; there is currently no treatment or cure. But if you look at the symptoms, there is a lot to compare to MS.
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Postby mshusband » Mon May 24, 2010 11:02 am

A co-worker of mine today happened to be in my office talking to me ... and it just happened she was just put on a new medication that has something to do with Parkinson's.

ANYWAY ... she went on to describe how she was in a BAD car accident a few years ago, the car flipped several times, and recently she has started experiencing neurological problems as a result of the injuries.

All I could think was CCSVI and MS.

I told her, listen, since you don't have MS right now ... go talk to a doctor about CCSVI as it relates to this. There have been a lot of cases of the exact same thing happening ...

She is going to ... will be interesting to see where it goes.
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Postby BooBear » Tue May 25, 2010 3:41 am

It's amazing to think about all the maladies that are associated with varying types of blood flow restriction to the brain...and how long it took for someone to connect the dots as strongly as Dr. Zamboni has. Good work!
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