I 'came out' at local NMSS dinner mtg tonite

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

Postby CRHInv » Fri Apr 16, 2010 1:02 pm

Good for you Rose! I bet you had more of an impact than you think. I bet some will go home and start researching.

I know how you are feeling. I did something very similiar and got a similiar result. I started by including the fact the NMSS was currently reviewing research requests and the date that the funding results would be announced. That slowed them down a little.... they are funding it, shouldn't it be worth talking about? But, like your audience most were unaware of any of this. I put business-type cards with good informational website addresses printed on them in anyone's hand who approached me. Funny though, one person from the meeting recognized me at my daughter's school a month or two later and I spoke to him briefly. Keep on spreading the word. PwMS need to know there is hope.

I was impressed by your eye doctor story earlier. Thanks for sharing that story too. I got a similiar response from my gyn doc the other day. She gladly took the research and said that they often see people with new onset MS. She wanted to learn more.

Keep on feeling good my friend!
Take care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby kc » Fri Apr 16, 2010 1:10 pm

Rose,

I love this story. After I am liberated, I think I will do the same thing. I won't expect much from the nmss or the neuro, but maybe someone in the audience will be interested.
YOU GO SISTA.

KC
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Postby julu » Fri Apr 16, 2010 6:18 pm

Go Rhonda, go Rhonda, go Rhonda!! Go to that meeting next week! You'll probably get the same type of response Rose did. And I got the same type of response at the last NMSS meeting I went to; a mumbled "more research needs to be done" and then quickly on to the next topic. The difference is, I can't stand up and say that I KNOW the procedure works, because I haven't had personal experience of its effects. It's still only a dream for me to have the testing and the procedure. But you and Rose can testify to your own experience. Please keep speaking out, for the sake of those of us who want to follow in your footsteps! We're cheering in your balcony!

Julie
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Postby AnnaP » Fri Apr 16, 2010 6:26 pm

Koodos Rose and thank you :!: I'm happy you're feeling 100% better.(can't wait for Bulgaria in June) Doctors and NMSS need to see that MSers are doing well and that there's some merit to Dr. Zamboni's theory.

hugs and kisses
Anna
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Postby Rose2 » Fri Apr 16, 2010 9:25 pm

Thanks for all the Kudos!
Appreciated! And so when i was in the dumps today a great thing happened.
Last week I had the windows in my home washed. After a year we weren't sure what was outside. My window cleaner is an awesome guy with a young family.
So he comes in and sees me and just about faints! He says, What is up with you? Last time I was here you were in bed!
I told him I don't have MS any more and the story. So he told his wife who told some friends. Today one of the friends called me and asked if I would go with them to a small group they have that meets to discuss CCSVI!!! I AM SOOOO EXCITED I CAN'T STAND IT!! They want info and someone had a tie in with a Neurological Radiologist who may be doing an Angioplasty on the Jugular soon. Don't know all the info yet, but can you believe it after the day before???
I will report back......oooh, don't know if I will sleep tonite. Imagine, a whole group of people who WANT to learn about it!! YIPPEEEEEEEE.
Thanks again to everyone, Rose ;)
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Postby Brainteaser » Fri Apr 16, 2010 9:46 pm

I recall going to an MS Society meeting about 20 years ago and I suggested that some of the MS budget be put into MS research - at the time there was none. I got howled down by the staff and even by MSers and their families - others present considered that the role of the MS Society was to provide care only, not solutions.

So in some ways, the more things change, the more they stay the same. Hopefully it won't be a further 20 years before MS organizations start to embrace ideas and areas that might truly help MS patients and not just themselves.

Phil
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Postby ndwannabe » Fri Apr 16, 2010 10:05 pm

Rose2 wrote:Thanks for all the Kudos!
Appreciated! And so when i was in the dumps today a great thing happened.
Last week I had the windows in my home washed. After a year we weren't sure what was outside. My window cleaner is an awesome guy with a young family.
So he comes in and sees me and just about faints! He says, What is up with you? Last time I was here you were in bed!
I told him I don't have MS any more and the story. So he told his wife who told some friends. Today one of the friends called me and asked if I would go with them to a small group they have that meets to discuss CCSVI!!! I AM SOOOO EXCITED I CAN'T STAND IT!! They want info and someone had a tie in with a Neurological Radiologist who may be doing an Angioplasty on the Jugular soon. Don't know all the info yet, but can you believe it after the day before???
I will report back......oooh, don't know if I will sleep tonite. Imagine, a whole group of people who WANT to learn about it!! YIPPEEEEEEEE.
Thanks again to everyone, Rose ;)


This is super exciting! That's the way to spread the word!

Where and when is this group meeting? Can I join?
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Postby whyRwehere » Fri Apr 16, 2010 10:49 pm

Phil,
Your story about research being pooh-poohed 20 years ago, is shocking, but also inspiring. We know changes can happen, we just have to STAY STRONG (as Wobbly used to say...where is he, anyhow?)
ALSO, if anyone goes to a meeting in the future, they should also wear a T-shirt, which they can uncover....because the hosts can talk over you, but they can't undress you!
Why
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Postby CRHInv » Sat Apr 17, 2010 6:10 am

Rose, your stories make me so happy. Keep it up!

because the hosts can talk over you, but they can't undress you!

Oh my goodness! This really made my morning!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Billmeik » Sat Apr 17, 2010 6:16 am

maybe if you said you were 80% better it would help. There seems to be a real issue with anything that's 100%...
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i came out

Postby aliyalex » Sat Apr 17, 2010 6:20 am

This is especially for Rose, and all of us who are such courageous trailblazers!!


"And those who were seen dancing were thought to be insane
by those who could not hear the music."
~ Friedrich Wilhelm Nietzsche ~


Let's KEEP THE FAITH. Aliyah
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Postby frijkaard » Sat Apr 17, 2010 8:32 am

Rose,

I am a newbie who has read your post and am so happy that you spoke out and served as the positive shining example that can not be ignored! In fact, you will not be ignored! :D
I was diagnosed with RR MS about five years ago. I have signed up for Dr. Mehta's CCSVI study in Albany. Yet, I've read about some who had were found to have blockage and the procedure performed with good results. Others with "MS" have been found to have no blockage whats so ever. My mind is running overtime (of course to the negative) and I imagine the possibility of doctors finding no blockage when I go to New York. Hence- no CCSVI procedure will be performed. I think this way because many persons who have undergone the procedure had symptoms like tremendous headaches which I have never had. My symptoms include poor balance/ccordination, limited physical ability (I've run two marathons before I was diagnosed, now I can't run ten yards), fatigue etc.

Anywhoo, please describe what you when you day you feel "100%" better? Do you still have MS? What symptoms do you have.?

I am inspired by your stand and hope that your example will serve as an example for others to follow!


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Postby Rose2 » Sat Apr 17, 2010 10:27 am

Thanks all again!
NDWANNABE~ I don't know the specifics of the meeting. They are picking me up at noon and I think in the Berkeley area. I will find out!

BILLMEIK~ I have considered the 'audacity' of claiming 100%, but I have to be honest and I do not have one MS symptom that I have suffered with for 10 years. Not one. so for me. 100%. and I do not want to take that away from myself. I know there are Stenters here who will say they are improved and not perfect and they will probably give themselves a different % but that is them and I am me and I am 100%.

FRIJKAARD~ You know when I realize how 100% I am? It is when my husband stops me in my tracks and says, "LOOK AT YOU!!" Then I stop and look at what I am doing and realize how very far I have come.
Because I don't think of it anymore and never feel any limitations it is always my family and friends who are more in awe of what they see than what I feel. I have to stop and say, yeah, I don't hurt! Yippee!
I hope that makes sense. Also, after I started to heal and continued to gain my strength back and every day i am stronger. Every day.
Having not done much for 10 years does take its toll but regaining the strength is exciting.
Sincerly, Rose

AND I love the T-shirt Idea. Yes, they cannot undress us. I think of the bumper sticker that says Ask Me About My Grandkids. We can get bumper stickers that say ASK ME ABOUT MY CCSVI or the Tshirt could be similar. Good idea!

Off to meet some neat people!! ;)
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Postby eric593 » Sat Apr 17, 2010 11:56 am

Rose2 wrote: they cannot undress us.


I don't know, Rose. They may try. I'd wear another shirt underneath just to make sure you're covered. :lol:
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Postby CRHInv » Sat Apr 17, 2010 12:10 pm

:D :D :D :D :D :D
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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