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


Postby blossom » Sun May 02, 2010 11:29 pm

there are so many well educated smart people on this site doing things i can't do but there are ordinary people like myself that can do things and we need all kinds. it's great like a big melting pot of knowledge. but there are way too many people that have ms who are not aware of ccsvi so how do they take their demands to their doctors or anyone if they don't know. i know more and more are getting the news but we need the whole ms community in every small town, big city suburbs whatever. IF THERE IS A LITTLE BEE FLYING AROUND YOUR HEAD IT CAN BE ANNOYING BUT IF THE WHOLE NEST COMES AT YOU---THEN THEY HAVE YOUR ATTENTION!! any help or advice would be greatly appreciated. i am pretty much homebound but i will try my best. HERE GOES- THERE ARE THE BARGAIN HUNTER BOOKLETS THEY SELL AROUND HERE. CAR SALE BOOKLETS ETC. NOW, GRANTED TO PLACE AN ADD THAT WILL BE NOTICED YOU WILL PAY, BUT IT IS CHEAP. IF YOU GO TO FLEA MARKETS OR KNOW A VENDOR PUT UP A SIGN TELLING WHAT YOU CAN BRIEFLY EXPLAIN AND WHERE THEY CAN GET INFO. ON THE INTERNET. ASK THEM IF YOU CAN LEAVE INFO. AT THEIR STAND WITH A FREE SIGN ABOVE IT. YARD SALES, LAUNDROMATS. USE YOUR IMAGINATION!! THERE ARE USUALLY SUPPORT GROUPS-TAKE YOUR INFO. WITH YOU PASS IT OUT. HOW ABOUT YOUR COUNTY FAIRS. PUT A BOOTH UP-PASS IT OUT. PESTER YOUR REPRESENTATIVES,CONGRESS, INS. CO.'S , MEDICARE. THEY USUALLY HAVE THESE MOTORCYCLE GROUPS THAT RIDE TO RAISE MONEY FOR MS-TRY TO GET IN TOUCH WITH THEM AND OTHER GROUPS. POINT OUT HOW THE MS SOCIETIES ARE NOT TRYING HARD ENOUGH TO MAKE THIS TESTING AND TREATMENT AVAILABLE. IN FACT IT IS EVIDENT THEY ARE TRYING TO SUPPRESS IT. GET THESE FUND RAISERS ON THE MS SOCIETIES BACK. there are things like a full page add in some prominent newspapers that would be pricey or billboards etc. maybe i'm getting a little carried away but how i'd love to go to a doctor with info. about ccsvi and him tell me gee there have been 50 patients ahead of you telling me about this and we've been looking into this and we start treating next week. i am just so fed up i've known of this treatment a long time and getting so much worse like so many others and a bunch of jerks are playing god with our lives. greedy,corrupt low life b------s. hmmh maybe that will be on top of my sign-A BUNCH OF LOW LIFE, GREEDY, SELFISH, LYING, CORRUPT, PUKE FACE BASTARDS ARE STOPPING ME FROM GETTING A TREATMENT THAT WILL HELP ME!!! gee that pretty much describes my x-husband too. i don't buy this bullshit that they are looking out for our interest IF THEY WERE LOOKING OUT FOR OUR INTEREST THIS VASCULAR CONNECTION WOULD HAVE BEEN OUT THERE A LONG TIME AGO INSTEAD OF BEING SHOVED UNDER THE RUG-AND THEY'RE STILL TRYING. THANK GOD FOR THE GREAT DOCTORS WHO ARE TRYING TO HELP US I AM SURE THEY HAVE TO BE VERY FRUSTRATED TOO.
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Postby Rose2 » Tue May 04, 2010 7:44 pm

I understand every drop of frustration you are posting. I would love to get a HUGE military helicopter or stealth bomber and screech the skies and drop pamphlets and info like they did in other wars. Feels like we are at war, huh?
We have to get heard.
I joined one of those old High School Classmates web sites, which is not my thing, but I posted my story and of course we all knew each other back then. I have had one old friend email me for info for her friend. She is going to spread the word.
Every bit helps. It will come. Sincerely, Rose
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