Newly diagnosed start by Googling 'Multiple Sclerosis'

[WeWillBeatMS]

I just Googled "multiple sclerosis". I was hoping that I was going to see Dr. Zamboni's interviews with that awesome Canadian cable newschannel CTV W5, CTV.CA (God bless them) which made me cry when I first saw it back in early 2010 because of the hope and common sense that it offers. What I got instead was various drug web sites and including Avonex, Rebif, Tysabri, Ampyra, Betaseron, blah, blah, multimillion dollar advertising budgets, blah. All of course hidden by some clever website names that wouldn't make you expect that you're going to a drug companies site. It makes me sick.
What was NOT there was anything about CCSVI & the Liberation Procedure.


Any ideas how we can help the newly diagnosed get unbiased information about CCSVI first?


WeWillBeatMS

[Cece]

This is the first mention of CCSVI, at the bottom of page two when googling multiple sclerosis:
http://www.wat.tv/video/multiple-sclero ... 1wod_.html

The National MS Society came up within the top few, so there is whatever is said about CCSVI on their pages (including their link to CCSVI Alliance).

[frodo]

I just Googled "multiple sclerosis". I was hoping that I was going to see Dr. Zamboni's interviews with that awesome Canadian cable newschannel CTV W5, CTV.CA (God bless them) which made me cry when I first saw it back in early 2010 because of the hope and common sense that it offers. What I got instead was various drug web sites and including Avonex, Rebif, Tysabri, Ampyra, Betaseron, blah, blah, multimillion dollar advertising budgets, blah. All of course hidden by some clever website names that you wouldn't make you expect that you're going to a drug companies site. It makes me sick.
What was NOT there was anything about CCSVI & the Liberation Procedure.


Any ideas how we can help the newly diagnosed get unbiased information about CCSVI first?


WeWillBeatMS

If you want to make google search for MS pointing here, just copy my signature for all the forums you participate

About google bombs:

http://en.wikipedia.org/wiki/Google_bomb

[1eye]

Or this link, which is to my web page, which contains a link labelled ""Link to Multiple Sclerosis"

[WeWillBeatMS]

It just really makes me sick knowing that somewhere today somebody is leaving a neurologist's office with the diagnoses of MULTIPLE SCLEROSIS and his or her recommended drug of choice, with no mention of ccsvi.



WeWillBeatMS

[Coolcatcarrie]

I totally agree! It is sickening!!! I think if we all pick 1 ccsvi page (agree on the same one) that has really good info and then get everyone you know to click on it, it will bump the website up on the google listings! I learnt this from my husband who is a web designer! Shall we do it? Because you are so right, people every day will be leaving a neuro's office with an ms diagnosis and no mention of ccsvi!

[Coolcatcarrie]

My hubby just said it will "help" bump it up - nothing miraculous will happen because nobody "really" knows how google works, but it's something that we could do to try?

[1eye]

I think it uses a weighted count of actual http links on web pages to see the number of references to a web page (links to it) there are, on other web pages. The weighting just means that some references are more 'authoritative'. But if a lot of well-known facebook pages refer to, say this forum's main page, Google will notice that and this forum will appear in search results.

The issue of associating CCSVI with 'MS' requires that a reference with one subject refer instead to the other. The number of 'semantically redirected' web links to a page is still the important thing. That's why you need a lot of postings of links on a lot of facebook pages or forum pages to make a difference.

[MegansMom]

You are exactly right.

Last August my daughter had a few neurology visits and several tests. they culminated in a visit AUGUST 19th 2010. At that appointment the physician gave her official MS diagnosis. Then she met with the PA, named Patricia , who armed her with drug information and literature. Two backpacks packed full with drug pamphlets, mugs, scarves, diaries, calendars, etc. Two big heaps of propaganda, each item with the distinction of a marketing ploy of convincing the patient that it's corresponding drug is somehow better than the next.

My daughter was overwhelmed to say the least. She didn't even have time to get used to the idea of an MS diagnosis , let alone make an informed decision of deciding a course of treatment and drug.

Now here's where being her mom and a nurse came into play. I had been
away at my HS 40th reunion when she had gotten the diagnosis (although we were not surprised). But now she needed my help with her decisions.

I knew to pick websites that were objective and NOT sponsored by drug companies. I wanted websites sponsored by folks with MS and their caregivers. It wasn't too hard and didn't take too long.

Then I learned about CCSVI. I read study after study and report after report. I watched countless videos on YouTube and "Read the threads"

I was a little disappointed that TIMS didn't have more of a lead in on it's opening page but I found what I needed.

The rest is history. I found a local IR doing venograms & venoplasties per Zamboni protocol. She was scheduled within a few weeks.

On Sept 21 Megan had a VENOGRAM that found a double candy wrapper twist in. Her Azygos and a partially blocked Left IJV. both were repaired with venoplasty. Her body got warm and pink all over and she complained that she was HOT in the holding area right post procedure. She said that everything was in better focus and her fog seemed less.
Over the next few days her fatigue melted away and her balance improved.
The numb areas on her thighs shrunk in size until it disappeared.
The odd electrical sensations abated and things were looking up.

But a new odd sensation started , difficulty saying the correct word consistently would rarely be a problem. A new one. But slowly over weeks and months they abated too.....finally by 2010's end so were her 12 previous MS symptoms just memories.

Today she is 7 months post procedure. She works out, rides a bike, kayaks, swims, and is an "active mom" of her very busy 12 yr old and full time employee. Life is full and happy and good. Hope resides at her home.

So to those who have happened upon this thread and are newly diagnosed. There is hope for you too. There is no guarantee it will work for all but it's real for many.

CCSVI is at least some hope, it's not a drug and it's not without some risks.
But for the newly diagnosed it is especially promising.

So read the threads, gather your info, learn all you can about CCSVI.
BEST OF LUCK TO YOU.

[WeWillBeatMS]

That is so cool MegansMom. About how well your daughter is doing post Liberation Treatment that is, not about being bombarded with drug company crap and no mention at all of CCSVI though. It's also great that your daughter has a loving mom who's a nurse that knows how to sift through the drug company sponsored websites. Not only that, you were willing to give some credence to an "unproven" theory such as inadequate bloodflow and oxygen to and from the brain and spine.

This is a great example of a newly diagnosed person responding so well to the procedure to correct the CCSVI.

It really makes me want to sit outside the office of one of the biggest MS neurologist's office down here in South Florida with a big sign that says "Got MS? Get checked for CCSVI".

WeWillBeatMS

[Cece]

It really makes me want to sit outside the office of one of the biggest MS neurologist's office down here in South Florida with a big sign that says "Got MS? Get checked for CCSVI".

Love the idea!!
And wishing you all the best on your upcoming treatment.