Should PPMS'ers and SPMS'ers get to "go first"?

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

Should PPMS'ers and SPMS'ers get to "go first"?

Postby julu » Sat Nov 14, 2009 7:13 pm

Hi all... I'm still really new here, but then again not really, since I've been reading every post on CCSVI for a couple months now. I feel like I know many of you! Thanks for sharing your knowledge and experiences.

I've had Dr. Dake's address and phone number sitting on my counter for several weeks, trying to decide if I should begin the process of getting on his waiting list. It's not that I'm unsure of whether I want to get the tests/procedure done; I DO. But there's another issue that's giving me pause, and I'd like your thoughts.

I was just diagnosed in August, after my second relapse. I've recovered pretty much completely. I've started Copaxone, and while I know its track record isn't a whole lot better than doing nothing, a 30% chance of slowing things down is pretty acceptable in my situation.

So... I'm struggling with whether it's selfish for me to fill one of Dr. Dake's priceless time slots, when there are so many others who have serious disability issues and no time to waste. I was just reading the posts from another newbie who is primary progressive. There is no way in the world I could live with myself if I took a spot in Dake's schedule that could have been used to help someone like that.

Just my thoughts. I'm interested in yours.
RRMS diagnosed 8/09; Copaxone 9/09; Copaxone + estriol study at University of Minnesota 10/09<br />
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Postby CureIous » Sat Nov 14, 2009 7:20 pm

I'd ask Alex about it, seriously, just call and ask exactly how you asked here. She's very easy to talk with. There's no guilt here, everyone that wants right now can get their name in and go for it. If you are convinced there is something here, and the scans prove as such, then you in effect HAVE ccsvi, and treating it early might prevent a lot of future complications. So why not? It's your body, your health and I doubt anyone is going to get kicked to the curb for your participation! :)

Mark

Also, keep in mind that the disease is progressing regardless of any manifestation of symptoms. Most of us went thru that initial-dx phase followed by "well what's all the fuss about anyways" periods of silence or near silence. But it's still there, lurking in the background, ever so slowly...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby cheerleader » Sat Nov 14, 2009 9:29 pm

Julu...
this is a no guilt zone. My hubby was newly diagnosed and had very little disability when we went to Stanford, but we thought he had vascular issues. And it turned out, he did. If you believe this is part of your MS, call Alex and look into it.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Should PPMS'ers and SPMS'ers get to "go first"

Postby EnjoyingTheRide » Sun Nov 15, 2009 3:55 am

julu wrote:I was just reading the posts from another newbie who is primary progressive. There is no way in the world I could live with myself if I took a spot in Dake's schedule that could have been used to help someone like that.


Julu,

I think I'm the newbie you refer to in your post. I really appreciate your kindness. You raise a good point. If tomorrow the entire world suddenly found a cure for MS, and lets say it is repair of venous stenosis, then we might need to come up with criteria for who gets the treatment first. But right now it seems that everyone who is willing to let Dr. Dake give it a try is able to get to him within months.

And personally I'm not in a super, super hurry. If I can get scheduled sometime this winter I'll be happy. Sure, I'll have some irreversible progression (at least until someone figures out how to repair axons and myelin) between now and then, but I'm still digesting all of this. I'm anxious, but I'm also cautious. Additional info is coming out every day, and I'm getting more and more comfortable all the time.

If Zamboni releases an incredible paper soon, my attitude may change and I'll start calling Alex every day!

I find your attitude and selflessness refreshing. I see so much of this type of empathy from friends, relatives, and the online MS community. It's one of the few silver linings of having MS- I become so much more aware of the kindness and strength of others.

So, as far as I'm concerned there is room for everyone with Dr. Dake. I suggest you don't let any feelings of guilt affect your decisions now. You have enough other factors to consider already.
Mitch
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Postby bestadmom » Sun Nov 15, 2009 7:26 am

I admire your selflessness. I'm SP, in a wheelchair. I want the stents to stop progression (sounds strange since there''s not much left to go).

I think people who are newly diagnosed and RR will have the most to benefit. It will stop the silent attacks and hopefully you'll never get to the point of disability. In the long run, it's better for you personally, and society as a whole.

But heck, I'm selfish and I'm going to call Dr. Dake again on Dec. 3rd. I have an appointment with Dr. Coyle on the 2nd and unless SUNY Stony Brook is starting the surgery in the very near future, I'm not waiting anymore. Dr. Coyle announced at a staff meeting a month ago that they were going to start diagnostic testing and the surgeries - they are related to the Buffalo team.
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Postby CureIous » Sun Nov 15, 2009 6:21 pm

bestadmom wrote:I admire your selflessness. I'm SP, in a wheelchair. I want the stents to stop progression (sounds strange since there''s not much left to go).

I think people who are newly diagnosed and RR will have the most to benefit. It will stop the silent attacks and hopefully you'll never get to the point of disability. In the long run, it's better for you personally, and society as a whole.

But heck, I'm selfish and I'm going to call Dr. Dake again on Dec. 3rd. I have an appointment with Dr. Coyle on the 2nd and unless SUNY Stony Brook is starting the surgery in the very near future, I'm not waiting anymore. Dr. Coyle announced at a staff meeting a month ago that they were going to start diagnostic testing and the surgeries - they are related to the Buffalo team.



Good for you! Keep us posted!

:) Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby julu » Sun Nov 15, 2009 6:52 pm

bestadmom wrote:I admire your selflessness.

But heck, I'm selfish and I'm going to call Dr. Dake again



It's a nice thought, but sorry... I'm really not selfless. And you MOST CERTAINLY are not selfish for trying to regain some of your life! All of us are on here because we have an urgent concern about our health (or the health of someone we love). For those of you who have already lost some major battles with this crappy disease, I am so excited that you have a real basis for hope now! RUN for it!

I guess one of the best things we can do is to spread the word in our own little corners of the world, to our own personal doctors, as Ozarkcanoer has been doing in St. Louis. When 400,000 MSers (in the US alone) wake up to the fact that there is hope for a cure, Dr. Dake is going to need a little help!
RRMS diagnosed 8/09; Copaxone 9/09; Copaxone + estriol study at University of Minnesota 10/09<br />
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Postby bestadmom » Sun Nov 15, 2009 7:10 pm

Julu,

You are right about spreading the word. There's a group of us in the Northeast who have been doing just that for over a month and we have amazing prospects who are reaching out to Dr. Dake. If we don't take control of our health and we wait for the neurologists to accept this, we'll be long gone.

If you decide to start spreading the word pm me and I'll give you some links to great lists.

Michelle
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Just Go

Postby hoodyup » Fri Nov 20, 2009 1:21 pm

Wow. I guess this is one of those "who do you rescue first your grandma or the little baby" type questions. Ultimately, everyone has to look out for themselves and their significant others first, and try to have room in your heart for others. I can't say who should be scheduled first on moral grounds because who can really make that call? If I could get my wife in tomorrow by taking cuts in front of an old lady, I would do it. I'm evil like that. I would not tackle the old lady or clothesline her, I do have principals. My wife will most likely brain me for talking like this. Something about courtesy and good manners...I dunno, she is my better half. I just know that each of us is desperate to do the best for our loved ones. So, my advice to all is "just go, man". My wife's dx was RRMS however, her course has been pretty much progressive since dx. I've been going slightly mad waiting for the scheduling call to come, but am rooting for everyone who goes down there and anxiously monitoring their progress. Good luck to all. Andrew
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