Why I can't offer specific advice....

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

Why I can't offer specific advice....

Postby cheerleader » Sat Sep 04, 2010 8:42 am

Hi to all new and old forum members--

I just wanted to say that I hope you understand that I can't make specific advice to people regarding medical care. I get lots of pms every day asking for my thoughts about CCSVI docs and treatment. I really am not qualified to make suggestions about individual's care....and when I do, what I say is do the research, talk to the doctors yourself, consult family members and pray on it. That's what we did for Jeff. Please don't be offended if I don't write back.

I wish it was more clear at this point, but it's not. Angioplasty has been wonderful for many, nothing to some, and terrible for others. Read all of the threads here, especially the negative results ones...

We are in the beginning stages. It's only been over a year since Jeff was treated. Yes, he's doing really well, but he was RRMS, diagnosed three years ago, his highest measure was 1.5 on the EDSS. And he's never been physically disabled. He had terrible fatigue, heat intolerance and cognitive issues which resolved. He remains on a bi-weekly dosage of copaxone, is on the Endothelial Health program and exercises an hour every day.

I keep writing about CCSVI and am working to advance research with CCSVI Alliance because I believe venous malformations are correlated to MS, and this needs to be studied....but I am by NO MEANS a medical professional. Hope that clears it up...
Come to www.ccsvi.org for the best, well-organized info. Look into clinical trials, stay close to home for follow-up and keep reading and learning.
take care-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Gordon » Sat Sep 04, 2010 2:14 pm

I am sure we understand. I certainly do. I have had a stent put in now because I beleive.

The one symptom that I wanted relief from was Nausea, but it is a hit and miss.

There is an anger brewing in Canada that will explode shortly.

The recent decision to not proceed is beyond my understanding.

Evil lurks.
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Postby ozarkcanoer » Sat Sep 04, 2010 2:48 pm

cheer... Sound advice as usual. Everyone should be aware of the research. Everyone should become aware of the not-so-good outcomes along with the good outcomes. And people show KNOW that there are no real answers yet. That CCSVI is promising to many of us should be obvious. Let's hear it for the CCSVI Alliance !!! Oh if I only had a crystal ball.

ozarkcanoer
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Postby Rose2 » Sun Sep 05, 2010 7:58 pm

Cheer,
I am sure those of us who have been here a while, and I hope the newer readers understand that what we see here in CCSVI is the tip of an iceberg, of whose size and complexity we do not know.
But, it is an iceberg that we have found! Discovery Station watch out!
Rose2 ;)
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Postby smokey » Sun Sep 05, 2010 9:18 pm

It's so easy to believe that this will be straightforward, because it sounds straightforward - and when it's not, it's a shock. Confronting. I firmly believe we now have further pieces of the puzzle. My new screensaver - following my IR's advice will be "Hang in There". Getting back into research mode. These sites are invaluable. Thanks to all who contribute.
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Postby thornyrose76 » Mon Sep 06, 2010 1:39 pm

I had never heard of CCSVI until I stumbled upon this board while googling one afternoon. I don't know if I will benefit from the angioplasty or not, I hope to, Ii'd be lying if I said I didn't but I'm also realistic. You gave me a thorough response last summer regarding what you and your husband were doing, I got the gist of it, you helped to educate me and so thank you. Keep doing what your are doing, if some benefit, now, in the future then that's worth it's weight in gold. :)
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Postby cheerleader » Mon Sep 06, 2010 2:41 pm

Thanks for the replies, and for understanding....
it's been hard balancing the desire to make sure CCSVI receives research dollars and adequate attention in the medical world with the knowledge that many people w/MS are looking for answers and healing right now. And even the doctors admit, we just don't know what we don't know.

There is a correlation between venous malformations and MS...that part is becoming clearer. The understanding of how to rectify the multitude of abnormalities the doctors are finding is what is not clear or straight forward. At all.

I've been trying to walk the line between hope and caution, and sometimes I cross over too far into one side or the other. Hang in there is right, smokey! Better days ahead--
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Daisy3 » Tue Sep 07, 2010 4:13 am

Hi Cheer,

I watched the video recording of you at a recent fundraiser, someone put the link on some thread on this site.

I did smile a bit as the thought occurred to me that under normal circumstances I doubt that I ever would have communicated to you, or you to the rest of the world...lol...seeing Joan was nice.

You have been kind enough to let people know about CCSVI. Individual decisions about what do with that information will have to be made.

My husband and I are still talking about it, he has some reservations, I just want him to be tested....it's up to us-him-to decide.

You do a lot on the behalf of people interested in CCSVI when you could have just let it go after having your husband treated-thank you for sharing:-)
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Postby Cece » Tue Sep 07, 2010 10:11 am

Daisy3 wrote:You do a lot on the behalf of people interested in CCSVI when you could have just let it go after having your husband treated-thank you for sharing:-)

I get the impression that 'just letting it go' is not in Cheer's nature! For which we all have much to thank!
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Postby Daisy3 » Tue Sep 07, 2010 10:45 am

Cece wrote:
Daisy3 wrote:You do a lot on the behalf of people interested in CCSVI when you could have just let it go after having your husband treated-thank you for sharing:-)

I get the impression that 'just letting it go' is not in Cheer's nature! For which we all have much to thank!


That is something to be grateful about... :wink:
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Postby elyse_peace » Tue Sep 07, 2010 12:22 pm

Joan
I add my thanks and a few prayers for you and your continued energy and desire to help.
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Postby magoo » Tue Sep 07, 2010 12:38 pm

Rose2 wrote:Cheer,
I am sure those of us who have been here a while, and I hope the newer readers understand that what we see here in CCSVI is the tip of an iceberg, of whose size and complexity we do not know.
But, it is an iceberg that we have found! Discovery Station watch out!
Rose2 ;)


I agree with you Rose, and I love the way you put it so eloquently.
Joan, This journey may seem daunting at times for you, but remember you have helped us in more ways than you can imagine. You have changed the lives of people with MS. My life has been changed as a direct result of your passion for discovering the mystery of MS and Jeff's bravery! Thanks.
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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