I 'came out' at local NMSS dinner mtg tonite

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

I 'came out' at local NMSS dinner mtg tonite

Postby Rose2 » Thu Apr 15, 2010 8:45 pm

Hi All!
So, I did it. I went to a local NMSS dinner mtg supported by Pharma money. The meeting was about MS issues and I waited. I waited.
I knew it would happen. I waited.
A lady raised her hand and asked the Neuro, a biggie from Brigham & Womens, Harvard Med and Mass General Hosp.
She asked about 'the vein thing' that she had heard about.
I waited until he finished his very incorrect, vague answer about how no one really knows anything, yada yada, then I raised my hand and told hime I was a Stenter and I was now 100% BETTER.
WOW. Guess they were ready for one of us. The NMSS Rep jumped to her feet and said 'Dr. (if forget) from UCSF said that 2 people have died and that there is no proof to support the danger" or something very close to that. I turned around and said "I said I am 100% better and I call that proof".
The speaker went on to something else very quickly but some people were interested. Not many. Most people were not aware of it at all and the ones who had heard of it were the ones who wanted to talk.
When it was over, I spoke with the NMSS lady and told her she had her facts wrong and explained what I know. She just said, I am glad you feel well. I tried to speak with the Neuro from Boston. I told him that they are starting a CCSVI study in his area. He just said. Oh Really? and kept packing up his stuff. He did not want to ask me one question. NOT ONE.
So I told him, It really works. Spread the word!
Sooooooooooooo deflating. But I made some nice friends who are interested and want to have lunch. So that it good. I just don't understand.
Sincerely, Rose ;)
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Postby Katie41 » Thu Apr 15, 2010 9:44 pm

How brave you are! You can only reach those who are ready, and are aware enough to be reached. As more correct info is presented, people's reality will be raised. Then, they will be able to share in that which we all want so much to share: this relatively simple procedure conceived out of love and given to the world with that same love in order to heal or begin to heal.

How fortunate for those who were ready to listen, that you were there to provide them with living proof.

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Postby Rose2 » Thu Apr 15, 2010 9:50 pm

Thanks Katie,
I needed the hug!
Rose ;)
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Postby whyRwehere » Fri Apr 16, 2010 12:18 am

Well done Rose! Katie, it is so true, we can't force people to believe in what they don't want to see, we can only present facts and personal stories and hope they reach someone who needs and wants them. I just wish the neurologists would not try to convince us that ccsvi is wrong...they are really shoving their opinions and their demands for studies over many years, down our throats. Why are they so angry???
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Postby EnjoyingTheRide » Fri Apr 16, 2010 2:39 am

Nice work Rose. In a perfect world, or even a decent world, the speaker would have said something along the lines of "Oh excellent! What luck for us that you are here and willing to speak to us. Please tell us about your experience."

Ya, right.
Please visit my blog at www.enjoyingtheride.com
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Postby bestadmom » Fri Apr 16, 2010 4:04 am

I would contact the Denver NMSS, which is one of their national offices, and let them know who in your area is giving wrong information. They need to be sure that their employees are giving correct information, and I think they know that. As little as they are putting towards it, they are funding CCVSI research.
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Postby Chrystal » Fri Apr 16, 2010 5:26 am


I'm so happy to hear that you are 100% better since having the procedure!!! WONDERFUL!!!! Thank you for speaking up at the dinner and sharing your experience!!

If there really was nothing to CCSVI, they would simply relay true facts about this condition. But they are all obviously worried because CCSVI has a significant part in the MS puzzle (and the truths they are not telling prove this) and so they are spreading incorrect information - the only way to strengthen their case.

We had the same experience here (Toronto, Ontario) at the live web-cast, with incorrect statements being made by the neurologist and MSS staff...as well as total silence on MSS part when they should have been correcting the neuro's wrong information.

The MSS is obviously advocating for neuros and most especially the pharamaceutical companies who support/pay for many of their events such as the dinner you attended - and who knows how much more. They are clearly not advocating for MS patients, with regards to CCSVI.

Take care, Rose.

God Bless,
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Postby Vhoenecke » Fri Apr 16, 2010 6:09 am

Big hugs coming to you from Canada.
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Postby ndwannabe » Fri Apr 16, 2010 7:35 am

Wow. Wow to your courage and oh wow to the cold shoulder response.

You would expect an uproar with a person who is a walking proof of nothing less than a miracle...

I bet this was deflating. So, not even other MSers got excited?
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Postby Rose2 » Fri Apr 16, 2010 9:32 am

It really kinda went over most MSers's heads. They had no idea what we were discussing and then it was cut short with no more than what I could share.
The loud vocal rebuff from the NMSS person just puts an MSer at ease, tho doesn't it?
A while back I had mentioned how excited my Opthomologist was when he learned of CCSVI and met me. The one lady who had asked the Neuro about the 'vein thing' stood up and yelled, Are you Dr. Aukers' patient??? I said yes. and she started to cry because he had told her all about me and my success but could not share my personal info.
She was very excited. and my opthomologist has been very active in spreading the information! I thought that was super cool as he has a very large and well respected practice. Very cutting edge and people come from all over so he gets alot of people to talk to about it!

And thank all of you guys here for your support.
I was very unsure about how it would go down, and I knew if it didn't come up I would bring it up at the end.
Oh, forgot. There was an RN at my table who was there with her daughter. As we discussed the CCSVI and how Neuros are not on board with it she just said, "Turf Wars". I didn't understand what a huge issue Turf Wars (Ego Wars??) are in Medicine. She spent some time explaining how large the issue is in the Medical World.
I just thought everyone wanted everyone to feel well.
Rose ;)
So, fyi.
Oh, another thing. There was a mother with her daughter. Her daugher was probably in 20s or 30s. Her daughter was wheelchair dependent, could not feed herself, or talk. I did not see her turn her head and barely her eyes. Her mom takes her to all of the dinner meetings and they drove over an hour to go to this one. I was surprised when the mom said We are happy that she is RRMS. The Neuro says she is RR because she has some good days and is not completely bed ridden. !!!!!!!!!!!
I went with her to the car to help her transfer her daughter who was completely dependent on her mom for that. A wonderful mom for sure and very involved in the every hour care of her daughter but how could a Neuro call that RR??? It would appear to be Progressive to me.
I don't know. Just reporting back. So sad. Damn I want this MS thing GONE.
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Postby prairiegirl » Fri Apr 16, 2010 9:45 am

I just love that so many of you who have had the procedure continue to post and to advocate for others-- a big thank you Rose2!
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Postby hope410 » Fri Apr 16, 2010 10:29 am

Congratulations, Rose!

Big step!
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Postby annad » Fri Apr 16, 2010 11:58 am

Big applause to you, Rose!

I would have loved to be a fly on the wall at your coming out moment!!! :D

Can you imagine if there were more of you in the room and we all stood up one at at time? lol What a party!

Continued great health to you!
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Postby ozarkcanoer » Fri Apr 16, 2010 12:10 pm

Rose2... I admire your courage and deplore the people who would not listen to you. You are a brave woman.

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Postby magoo » Fri Apr 16, 2010 12:46 pm

I am very impressed! You are one brave soul. I wish I was there with you to help make the case for CCSVI. I've been a little down about how much resistance there is lately. It's hard for us because we KNOW the results. The waiting for more research is frustrating because we want everyone to have a chance like we did. You did a good thing!!
I have signed up to attend a Biogen sponsored meeting given by my neuro next week. I still don't know if I have the gutts to go. Will it do any good??? We'll see :?
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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