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Old 09-12-2010, 02:48 PM   #1 (permalink)
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Default Ccsvi

Hi,

As I'm sure many of you are aware, CCSVI is a controversial issue for those with MS. The claim is that blocked/partially blocked veins are what cause MS symptoms, and that a medical procedure to un-block the blockages brings relief from symptoms. According to many who have had the procedure (called "Liberation Treatment), a dramatic relief of symptoms often results.

Does anyone know if anyone with PLS or ALS has had the treatment, and if there were positive results?

Thanks!

Jim

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Old 09-12-2010, 05:14 PM   #2 (permalink)
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Default Re: Ccsvi

I work with MS patients everyday. Whats a heap of rubbish. Can't possibly help ALS either.My patients rub a solution on there foreheads at night which stops relapses. I get upset when people take advantage of others with chronic illness.
One of the most famous "natural Diet treatments" for MS is lectured about world wide by a chap that has MS and controls it with his dairy free, red meet free diet. He does not widely advertise that he has daily injections of a disease modifying agent as well!

Sorry to have such a strong opinion but I see it every day. Just think it through carefully and try to make sense of the blood blokages causing either MS lesions within a brain or spinal cord, and Blood blokages causing degeneration of motor nerves?
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Old 09-12-2010, 07:41 PM   #3 (permalink)
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Default Re: Ccsvi

Jim,

I read a story that appeared in the Chicago Tribune back in the mid 90's about a trumpet player in the Chicago symphony. He was given the news that he had Parkinson's and further told by his doctor that his days of being a musician were numbered (one of this fellow's hands was almost unusable).

Not willing to give up music and give into Parkinson's, this guy decided that he still had one good hand and with that, he could at least strum a harp. After playing the harp for some time, he noticed his symptoms went into remission. If he went a day or two without practicing the harp, his symptoms would come back. He kept a log of his symptoms and practice times. He showed this to his neurologist. The neurologist, after some time, was so impressed with the success that harp playing brought, did his own study with 100 patients that suffered from Parkinson's, Multiple Sclerosis, and other similar degenerative diseases.

The neurologist placed each of these 100 patients on a prescribed regimen of harp playing. He noted that every one of the patients in the study experienced remission of one degree or another.

Out of this, the doctor hypothesized that because the harp leans against the neck and vibrates, the vibrations could possibly be stimulating glands in that area that have to do with the body's immune system.

I know of this article because it was sent to a harpist I knew by her mother. I copied it and sent it to my sister that has MS. Unfortunately, harps are expensive and my sister didn't feel this was something for her.

It was further reported the the Lyon-Healy harp company in Chicago couldn't keep up with orders after this article appeared in the paper.
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Old 09-13-2010, 05:36 AM   #4 (permalink)
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Default Re: Ccsvi

Quote:
Originally Posted by Alyoop View Post
I work with MS patients everyday. Whats a heap of rubbish.
Quite a strong assertion speaking about a disease of unknown origin

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Originally Posted by Alyoop View Post
Can't possibly help ALS either. My patients rub a solution on there foreheads at night which stops relapses. I get upset when people take advantage of others with chronic illness.
Who is taking advantage of anyone here? nobody profits directly from the CCSVI theory. The main researcher (Dr. Zamboni) is not treating patients at all. The only indirect benefit he could get is a patent that he has got about a doppler scan.

In any case, the doppler equipment manufactures are the fool ones, but I doubt they are such a thing. By the way, it seems that they are willling to pay for the patent.

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One of the most famous "natural Diet treatments" for MS is lectured about world wide by a chap that has MS and controls it with his dairy free, red meet free diet. He does not widely advertise that he has daily injections of a disease modifying agent as well!
Complete irrelevant to the matter that we deal with.

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Originally Posted by Alyoop View Post
Sorry to have such a strong opinion but I see it every day. Just think it through carefully and try to make sense of the blood blokages causing either MS lesions within a brain or spinal cord, and Blood blokages causing degeneration of motor nerves?
You really have a strong opinion. Are you properly informed about these recent developments?
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Old 09-13-2010, 10:05 PM   #5 (permalink)
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Default Re: Ccsvi

Alyoop is a neuro nurse whose field is MS, and is married to a neurologist. That's a pretty bang up team to have strong opinions on such matters!

Anyhow, after some quick reading, they said that while people with MS have blocked veins more often, they don't all have them. So clearly, that can't be THE cause of MS. And what of the 1/4 of patients who did have further attacks? And non-RR MS? It all seems quite incomplete. It would be nice if it could help some people though.
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Old 10-01-2010, 12:17 PM   #6 (permalink)
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Default Re: Ccsvi

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Hi,


Does anyone know if anyone with PLS or ALS has had the treatment, and if there were positive results?

Thanks!

Jim


Yes, my mother has ALS & she did Doppler & surgery 3 months ago...Dr.tarig found that sha had blocked in the both side of her neck...

Also, other patient with ALS who is a friend of me has found blocked in the neck and inside the head!
We will try to chick mom's head by Doppler in the next appointment...

In my opinion, the blocked in patient with ALS is sure...but'' where'' is the case
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Old 10-01-2010, 06:19 PM   #7 (permalink)
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Default Re: Ccsvi

I am off to an International MS conference in Sweden next week, amoungst hundreds of world renown Neurologists who desperately want to help their patients. If I find that your theory is in fact correct, I shall offer you my apology.

If it is correct I am sure they will talk of little else, and no, the pharmaceutical companies are not sponsoring the conference or my travel. (I am paying for it myself). Just in case thats what you might think.

Look forward to reporting back any exciting new research.

Aly
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Old 10-02-2010, 11:20 AM   #8 (permalink)
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Default Re: Ccsvi

Have a safe trip Aly!
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Old 10-02-2010, 01:40 PM   #9 (permalink)
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Default Re: Ccsvi

Thanks
Cant say that i am not nervous. Its the first time I have left my kids alone and I am away for a month! I have already heard of a party organised, and my youngest has been sick.

This CCSVI was apparently discussed at a recent conference and was described as Hocus Pocus. They are going to do a clinical trial not to prove that it works, but to prove it does not. This is because there have been problems with Americans demanding the surgery. The surgery is also not without some risk, which is worrisome.

Aly
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Old 10-02-2010, 08:09 PM   #10 (permalink)
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Default Re: Ccsvi

Buthayna,

Did your mother get any relief from her ALS symptoms after the procedure? You said it was three months ago... is she the same? Better? Worse?

I'm following CCSVI on the FaceBook group and the ThisisMS website. It's astonishing to me how it polarizes everyone. There are plenty of YouTube videos showing people who have gained benefit from the procedure, and I have friended a number of people on FaceBook who have had the procedure, and they say it has helped them. Later this month, I'm meeting a gentleman who recently had the procedure when he comes to Atlanta for a follow-up session. I see no reason to believe they are all lying. What would be the point? Placebo effect? Maybe.

Of course there are also people who have received no relief from the procedure. So maybe it is all nonsense.

I have PLS, and I've seen more than a few neurologists since being diagnosed, and none of them can tell me why I have the disease, or really what the disease is, aside from the usual upper motor neuron stuff we all know. Maybe it's my immune system turned against me, maybe it's a problem with blood drainage from my brain. Since there are no definitive answers one way or another, I'm going to keep an open mind.
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Old 10-03-2010, 11:18 AM   #11 (permalink)
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Default Re: Ccsvi

[QUOTE=Jim Mulligan;141401]Buthayna,

Did your mother get any relief from her ALS symptoms after the procedure? You said it was three months ago... is she the same? Better? Worse?

QUOTE]


My mother got better espeicaly in moving her hand & arm ...it was amazing...
Also, the cramps almost gone...
The improvement stable in the most of time...
But keep in mind that ...the progress of weakness is very sharply &Quickly...
So we might not see the result early...let's have more Patience

I just want to say that one patient with ALS who is not suffering yet from disability ...is going to do the procedure ...& we will see the result soon hopefully
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Old 10-10-2010, 03:02 PM   #12 (permalink)
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Default Re: Ccsvi

I'm interested in having the CCSVI treatment....How do I go about it? ..... I've been living with ALS for 14yrs and want to know why I'm doing so great....most don't even get one year.... Maybe I have blocked veins! It'll be interesting to know the test results!
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Old 10-12-2010, 05:45 AM   #13 (permalink)
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Default Re: Ccsvi

Fallen Angel,

Go to Facebook and search for CCSVI: http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297

The group called "CCSVI in Multiple Sclerosis" which has lots and lots of posts about where people go for treatment. Another place with a TON of information is thisisms.com Once there look for the CCSVI board. That has a great many posts with everything from addresses and locations of Doctors performing the procedure, to success stories, and stories of failures too.

It's great you are living for so long with ALS. Are you still mobile? Do you need any kind of assistance?
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Old 10-19-2010, 02:28 PM   #14 (permalink)
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Default Re: Ccsvi

No, I'm not mobile. I require 24hr care. I have an on-screen keyboard that I use with mouse.... free download, Click-N-Type...... great program!

CCSVI is getting great reviews for MS patients. Not much info on ALS patient! I'll keep searching....
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Old 10-26-2010, 03:05 PM   #15 (permalink)
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Default Re: Ccsvi

Sorry fallen angel, you will not get much info as ALS is in no way connected with ccsvi. It seems through much research recently , that MS is not either. Please read my post from recent MS scientific conference posted on ALS forum. The treatment is also dangerous, so not worth the risk.

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