as patients worsen, they turn to internet for information

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

as patients worsen, they turn to internet for information

Postby Cece » Sun Nov 06, 2011 8:27 pm

http://www.reformedms.org/ms-ccsvi-news ... -raw%5D-90
An Internet survey of MS patients reports that as patients worsen, they are increasingly likely to turn to the Internet rather than their neurologist for MS information (Miller et al. ECTRIMS 2011; abstract P178).

Not-so-shocking news out of ECTRIMS....when we do everything our neurologist says to do, and we still worsen, it is more likely that we will turn away from condescending neurologists and toward the internet for information. And, with any luck, we end up at a CCSVI forum.
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Re: as patients worsen, they turn to internet for informatio

Postby David1949 » Sun Nov 06, 2011 9:20 pm

Makes sense to me. When the mainstream medical community doesn't have a clue we might as well look elsewhere.
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Re: as patients worsen, they turn to internet for informatio

Postby Sunnee » Sun Nov 06, 2011 9:55 pm

To be directed to ccsvi by the internet is very very dangerous, there is a massive amount of money being made out of ccsvi, and in my opinion is not the answer, the narrowing of blood vessels do exist but because of a cervical spine (neck) issue.

Hopefully this will soon be realized with the upright MRI. yes there will be some benefits re widening, but it wont address the issues of further misalignments caused by knock on effects of the initial problem in the neck. Atlas adjustment increased my blood flow significantly.

I'm sticking to UCC, its working for me and it will do for many others too and its permenant
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Re: as patients worsen, they turn to internet for informatio

Postby Cece » Sun Nov 06, 2011 10:16 pm

Did you find out about upper cervical care on the internet?
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Re: as patients worsen, they turn to internet for informatio

Postby Jugular » Sun Nov 06, 2011 10:36 pm

OMG, MS patients are using the Internet to look up information about their health. And the more health issues they have, the more they use it When did this start and why weren't neurologists alerted about this breaking development?
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Re: as patients worsen, they turn to internet for informatio

Postby Sunnee » Mon Nov 07, 2011 1:34 am

Cece

It is irrelevant where I have obtained my info from. The internet can work for you or against you, you have to know how to use. ccsvi is a classic case, you will be bombarded with adverts and information some with the sole purpose of making money, in an unproven symptom as to why it happens,

Just me entering in ccsvi on here or my blog and out come the adverts, it shamelessly used as a selling hook.

There will be people on here and probably for a year or so to keep the ccsvi debate live and kicking, you wont know that you are being used by these people as they will just merge in, it cannot be controlled, this is a virtual site anybody can give a false can say anything.

I will not shy away and not have an opinion, because there are those that will jump up and down on me just because I dont have the same one as them.

So no I wont get into a debate with anyone re ccsvi, as I consider that a waste of my time, I'd rather concerntrate on
a subject that to me has real creditability in the whole multitude of problems it creates from spasm, tremor and pain, my pain has now reduced by 90% with the help of Chiropractic adjustment and now a Neuro Physiotherapist, i can now look forward to a future that is pain free, and I intend to walk again and hopefully this side of Christmas, but I dont push it just let things happen and fall back into place.


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Treating symptoms

Postby MarkW » Mon Nov 07, 2011 3:36 am

Sunnee wrote: "ccsvi is a classic case, you will be bombarded with adverts and information some with the sole purpose of making money, in an unproven symptom as to why it happens."

Most of us are bombarded with adverts, mine included upright MR and Atlas re-alignment. ThisIsMS tries to advise people how to have CCSVI syndrome diagnosed and treated (see my gold standard thread).
You are simply wrong to advise pwMS not to seek diagnosis for CCSVI syndrome just because some doctors are offering a sub optimum service and advertising it. Instead inform pwMS where they can get an accurate diagnosis of spinal mis-alignment and if the have that symptom get it treated safely in different countries. That would be helpful as it is missing.
MS is multifactorial, this means it may benefit from different treatments not just one.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: as patients worsen, they turn to internet for informatio

Postby Sunnee » Mon Nov 07, 2011 4:30 am

Hi!


Try actually reading and digesting what I wrote, dont just have a knee jerk reaction to it,


You are entitled to your opinion as I am mine.

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Re: as patients worsen, they turn to internet for informatio

Postby Jugular » Mon Nov 07, 2011 9:35 am

There is a certain "my bike is better than your bike" mentality that pervaids these forums. As consumers of healthcare services, we are likely to be biased toward our 'purchases ', defend them, and seek validation of our own experiences with others.

CCSVI treatment worked for me, but that doesn't disprove the validity of other treatments. By the same token, if chiropractic neck manipulation helped you that's a great thing but it doesn't disprove CCSVI. The same can be said of stem cell chemotherapy. MS is a grabbag of symptoms and highly individualized. What works for one person, might not work for others. Unfortunately untill we have large scale treatment trials of these various treatments, we will remain in this murky world.

So while there is plenty of room on the MS road for all our bikes, this avenue is clearly labeled "CCSVI". Keep that in mind when "peddling" your recommendations.
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Re: as patients worsen, they turn to internet for informatio

Postby Cece » Mon Nov 07, 2011 10:25 am

Jugular wrote:So while there is plenty of room on the MS road for all our bikes, this avenue is clearly labeled "CCSVI". Keep that in mind when "peddling" your recommendations.

nice analogy
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Re: as patients worsen, they turn to internet for informatio

Postby 1eye » Mon Nov 07, 2011 10:42 am

I have made a nuisance of myself on the Internet, and I did it long before CCSVI. I sought medical information from what seemed reliable sources, both on the Internet and elsewhere. I think it is a perfectly natural reaction to a diagnosis this severe, one that is shared with sufferers of many other diseases. To me, the big difference with CCSVI, is that neuros and drug vendors, who have no other offers except to buy into a competing gravy-train, are protesting a little too much, to paraphrase somebody in "Hamlet".


* P.S. I bet my trike is better than yours. Rode it day before yesterday. In Ottawa. In November.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: as patients worsen, they turn to internet for informatio

Postby Sunnee » Mon Nov 07, 2011 11:44 am

I prefer to let others make up their own minds, dictating 'aint my game enuff said, no digs, sarcasm required, not by me, now that would be just a low blow.


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Re: as patients worsen, they turn to internet for informatio

Postby Ernst » Mon Nov 07, 2011 11:53 am

I discovered CCSVI first time in june 2009.. and since that been reading and thinking about it quite a lot. When we (me+wife) decided to travel to Poland for operation, there was very careful planning and serious thinking. I was very interested about "worse scenarious" and risks too. In may 2010 first finnish patients went to Poland and told their experiences, that was it - we contacted the clinique in Warsaw and quite soon had the date for treatment.

I quess my wife got the best possible treatment effect you could hope and benefits have lasted now almost 17 months. For me the internet was and is like giant library, where you can get unlimitedly information. When there is conflicting data, you have to do your own choises - which way to go. I have done lots of choises with my wife, to treat her disease; nutrition, exercise, angioplasty. These options were not on her neurology's "treatment menu", there was only interferon.. which didn't suite for her at all, made her symptoms just worse. So, no wonder if people search information from internet..
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Re: as patients worsen, they turn to internet for informatio

Postby Sunnee » Mon Nov 07, 2011 12:41 pm

Ernst


Thats exactly right..it comes down to choice whatever you decide, its your decision and nobody elses,.......


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Re: as patients worsen, they turn to internet for informatio

Postby David1949 » Mon Nov 07, 2011 1:13 pm

Sunnee wrote: there is a massive amount of money being made out of ccsvi, and in my opinion is not the answer,


Well speaking of massive amounts of money; the mainstream medical drugs for MS cost $20k to $40 each year. By comparison Liberation costs about $10k (if you shop around before you buy). And the mainstream drugs don't even pretend to be able to cure you. At best they reduce the number of relapses you have if you happen to have RRMS.
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