I 'came out' at local NMSS dinner mtg tonite

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

Postby Rose2 » Sat Apr 17, 2010 5:22 pm

HAPPY, HAPPY, HAPPY!!!!
OK, I am back now from the nice lunch meeting I had locally here with some MSers who met on the web and have lunch every Saturday to discuss CCSVI.
I was deflated from the NMSS dinner as you know.
Today I met a guy who had screening here locally (SF area) by a private practice Neuro-IR and he is having his 6 centimeter stenosis opened with angioplasty on Monday right here nearby!! First time for this MD to do it for this but the MD said it should be easy and he is excited to do it!! They mentioned Dr. Dake and the MD said, Oh, That's my Buddy! I will call him and talk to him about this. The MS pt told him to get ready to be real busy!! And this guy goes home the same day!!
I met a lady who is having her MRI/MRV at Stanford this week. So I guess there is some action there?
I met a lady who is very involved in all of the research and fund raising.
I met a lady who didn't know alot about CCSVI and she got some good info.
They were all happy to listen to my story which I was happy to share.
I met a guy who's Neuro has changed her mind and is now interested in the CCSVI for him!
All local! and all positive, forward CCSVI action!
I was encourage by everyone. I was feeling the loss of momentum for CCSVI, what with all the studies taking so long and this group is
NOT GOING TO BE DEFEATED. This is grass roots and they had some really nice stories of getting local private practice MDs to "Listen Up"!
I loved this one. One couple took both sets of inlaws in with them to present the info to the MD ( I forget which specialty) so they would appear to have strength in numbers. I loved that one! and it worked!
So, keep up the HOPE! It is there and keep on knocking on those doors!
Sincerely, Rose
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Postby magoo » Sat Apr 17, 2010 5:48 pm

Thanks Rose, I needed that :)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby catfreak » Sat Apr 17, 2010 5:51 pm

Rose!!!

I wish I could have been with you at both meetings!! I would have stood by you and cheered you on and shared my Stanford story too.

I go back to my Neuro May 17th for a check up and I am wondering if my doc has learned any more than when I was there on Feb 1st. We will see!!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby shoosh » Tue Apr 20, 2010 6:58 am

Your actions are inspriational :D Thank you!
I am trying to rally some peolpe to do a similar thing on MS awareness Day on Becon Hill in Boston on Wednesday May 5th! Only we don't have some one who has had the treatment to join us yet
Not going to stop us! But would love it if some one is able to join Us :D
Doorbell just rang and I got my "no drain no Gain" T shirts!!!!! Would love to have people join us to get the word out! Starts @ 10;00 am. at the State House In Boston! PLESE TELL YOU FAMILY AND FRIENDS WHO LIVE IN THE BOSTON AREA TO JOIN US :D
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Postby whyRwehere » Tue Apr 20, 2010 7:04 am

Arcee, from this forum, is from Massachusetts...maybe pm her and she'll answer???
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Postby esta » Thu Apr 22, 2010 9:12 am

Hi all & rose2,
I feel for you, and glad of the good outcome in the end. Our local walk is coming up,and I am trying to spread the word to people whom,, I'm shocked to find out still don't know about CCSVI or don't think it will work for them.
my t-shirt and buisiness cards are the best i can do, i guess...
Two of us are on our way to Poland shortly after. I was hoping to form a liberated local group( there's probably more of us) that could spread the word by, having a group forum, but I guess we will have the same up hill battle. I am intent on being vocal but I see it is going to be hard even after. cheez[/i]
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esta

Postby Rose2 » Thu Apr 22, 2010 9:34 am

esta,
Yes. I become more angry and upset with this 'bump in the road?' everytime I think about it.
I believe there are very many MSers who only get their info from their Neurologists, as I observed at the meeting. Those who had not heard of it still had no curiosity about CCSVI and were more interested in the computer games the MD speaking was recommending.
And of course because he had discounted me, I meant nothing.
That is an educational issue that I am not sure how to get to.
When you believe your Neuro is God and the MS Society publications are what educate you, it is going to be difficult.
So many MSers are pretty isolated physically and or mentally from alot of good info.
It broke my heart to look into their blank stares when I wanted to see that lightbulb go off!!!!
My friends and family have become HUGE CCSVI proponents because they see me and they can reach ALOT of people. Also, they are shocked and insulted to learn of the problems with screening, procedure availabilty and the almighty mindset. They really are shocked much more than I am and they are ready to speak up.
So we need to give them information to have at their ready also.
Sorry for the rant.....I was at dinner last night with my office staff I worked wtih for years and it was a roaring, great time. They were in tears, also. Just like the Good Ole Days. ohh , we have had a few.
They in turn, were SHOCKED when I explained my MS meeting experience.
They are going to put up a pamphlet display in the waiting room of the office when I can get some.
Do we have some or is there a source yet? Maybe with the Alliance?
I know alot of my friends offices that run the gamut of occupations would put up a brochure stand for anyone to grab.
OK, thanks. Rose ;)
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thanks

Postby prairie » Thu Apr 22, 2010 3:51 pm

(((((((rose2))))))
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Postby cheerleader » Thu Apr 22, 2010 7:19 pm

More hugs to you, Rose. The Alliance is working hard on pamphlets, logos, business cards and things to hand out to help educate.

Here's a video Mitch (enjoying the ride) sent to some of us, to help us understand what makes a movement. You're an early adopter, Rose. Some may say you're crazy, but I'll come dance with you anytime :)

http://www.ted.com/talks/derek_sivers_h ... ement.html

enjoy-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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came out

Postby aliyalex » Thu Apr 22, 2010 7:27 pm

my favorite quote from Nietzsche fits perfectly here:


"And those who were seen dancing were thought to be insane by those who could not hear the music."
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Postby Rose2 » Thu Apr 22, 2010 8:04 pm

Thank you all so much for your support and HUGS! Love it!!
FYI, I am calling tomorrow my Milestone Day.
I was called earlier this week and asked if I felt well enough to help set up the Dental Care dept. of a local Homeless Shelter/Care Provider.
They are a Homeless Shelter and have a Mobile Health Care RV and want to set up something for dental for adults. The kids are pretty well covered with State insurance.
AND I SAID, HELL YES!!! I FEEL GREAT!!!!!
So, by the grace of CCSVI and my Liberation, I am excited to see what I can do with my experience to help this to fruition.
I do believe, for me, there is a reason I feel good, and I need to pay it back and forward anyway I can.
I am in this for the duration. Watch out! Here we come!
I will let you know how my meetings go tomorrow. SOOO Excited!!
Sincerely, Rose ;)
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Postby Rose2 » Sun Apr 25, 2010 9:49 pm

Hi All!
I went to the planning meeting for dental care at the homeless shelter on Friday. I was very excited to go.
It was very interesting and eye opening.
They are a young, vibrant and enthusiastic group of professionals and volunteers.
I have decided that I am going to pass on this endevour. I feel badly about my decision as I realize this is better served by professionals that are younger. It is very demanding and I do not want to take on more than I can chew.
I was so excited to go and I wish I could do it all, but I cannot.
Dentistry has been my love for 30 years but now it is CCSVI. I wanted to think I could do both, but I had a long talk with myself and I have chosen CCSVI. This probably sounds dumb if you are reading this, but it was such a surprise to me that I could leave the excitement of patient care behind and look forward to the CCSVI future.
I hope I can help in this some way.
I just wanted to post my follow up.
Sincerely, Rose ;)
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Postby julu » Mon Apr 26, 2010 6:31 pm

Thank you Rose, from the bottom of my heart. We really need you in this endeavor. There are thousands who have the background to help with the dental project (which is a most worthy project, I am not slighting it). But there are just a handful of you who have personal experience with treatment of CCSVI. Your stories speak much louder than hundreds of us wannabe's!
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Postby Rose2 » Tue Apr 27, 2010 7:24 pm

Thanks julu,
I appreciate it. Dinner conversation with my family brought up the same points. It is the direction I want to go.
I HOPE I can help.
I can go as a Show and Tell display to Conferences and Symposiums all over the world! I am available!!
Sincerely, Rose ;)
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Postby magoo » Tue Apr 27, 2010 7:50 pm

Rose I love your attitude!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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