All Users Post Here At Least Once

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

All Users Post Here At Least Once

Postby rssugg » Tue Aug 24, 2010 8:04 am

Hello all! Just stop in and say hello here!
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Postby Shueywho » Tue Aug 24, 2010 8:21 am


I am a partner to someone with ms. I don't post much, but I follow this board daily. I am so grateful for all the information good and bad that is collected here. My spouse got her call from Albany yesterday, she is scheduled for October 7th. We are so excited and trying to keep everything in perspective and real. I don't know that this is 'it' but at least it is hope and honestly that is not something we had a year ago. We were looking at how long we would have before she could not even be alone in the house. Her mental decline has been dramatic over the last couple years and I am watching my partner disappear before my eyes.

I am so scared for her, and now I am afraid I am too hopeful in ccsvi.

Thank you all on ThisIsMS, you have been such a great resource for information and support.

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Postby Algis » Tue Aug 24, 2010 8:24 am

Everything will be just fine :) stay right by her side... She'll be back soon and kicking as never before ;)
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Postby orion98665 » Tue Aug 24, 2010 9:15 am

Remember, researcher, research, research, and never give up! Giving up
is giving in! :evil:
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Postby bonzo1986 » Tue Aug 24, 2010 11:23 am

Long time reader/lurker.
Wife has MS and is in decline also :(
I have her on the list for AHI in December, now lifeguard. Having a hard time overcoming her fear of the treatment and keeping her outlook positive.
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Postby rssugg » Tue Aug 24, 2010 5:54 pm

^a simple, short and proven procedure can't be any worse than MS!
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Postby garyak » Tue Aug 24, 2010 6:46 pm

Dr. Sclafani's thread should be required reading for neurology residents
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Postby Cece » Tue Aug 24, 2010 8:04 pm

bonzo, I think you are making the right choice in encouraging her to go through with this. I know what it's like to be the person with MS, I think it must be different but just as hard to be the partner or caregiver.

This was a nice idea, it's great to hear from everyone.
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Postby elyse_peace » Tue Aug 24, 2010 11:20 pm

Hi everybody -
This is a great opportunity to introduce myself and say hello.
60 yo woman, Dx '98 (48 yo), ill since '83. No classification by neuro, currently self dx PPMS. (never had relapse, declining steadily now).
Got link to CTV interview with Dr. Zamboni last November. Don't know how I then found TiMS, but I'm so glad I did. The information here is great and there are so many people with such loving natures. I am learning so much and having my heart uplifted at the same time!!! I need both so much. Thank you all. :D
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Postby CNClear » Wed Aug 25, 2010 1:51 am

It IS hard! We all empathize with you about that...the two things that have helped me a lot are...

Fake it till you make other words, even if you don't feel like smiling, hoping, helping, moving...what ever is it anyway. For instance, if you smile, even if your heart is not in it, over it, around it...your brain (somehow) translates that into some kind of feeling of happiness and you'll feel better, at least a little...or you'll walk past a mirror and burst out laughing at yourself and laughing is ALWAYS helpful...there are even "Laughing Yoga"'s worth a laugh!

And the other is...Give it to God...let Him worry about it, instead of you...He said He doesn't want us to worry...this one is harder to do than the first does take practice to stop taking the worry back from Him by thinking we can do it better, or more...we can't and don't have giving it to God it takes such a load off of us, as if we could actually accomplish anything by worrying any way. Every time you feel yourself starting to worry, say a quick prayer (like I say, sorry I was doubting You. You got it back.) and actively, get your head into something else...dwelling is bad...just trying is bad...doing something is, well, doing something positive...

Hope this helps, in some way...thanks for helping me to remember this stuff, too...

CNClear, aka, Lisa
dx'd 1983 RRMS
Have not been angioplastered yet...but soon.
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Postby DWP » Wed Aug 25, 2010 12:31 pm

Hi all CCSVI treatment 7/28/2010 :D
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Postby 1eye » Wed Aug 25, 2010 7:11 pm

Well OK. But I must commend Dr. Siskin. Besides being the person with the most CCSVI experience in North America, he is the guy you want on your side for tricky work like my left IJV turned out to be. He's very conservative, but he'll fix your jugular if you have one.

So this is my post.

Consider it posted.
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
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Postby BadCopy » Wed Aug 25, 2010 10:52 pm

Siskin 8/20/2010 !

They have their **** together up there in NY. And it may be a scary thought before hand,but it's really no big deal. It's over before you realize what happened. I had to ask where it was, what they did etc. They keep you pretty loopy :lol:
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Postby bonzo1986 » Thu Aug 26, 2010 6:14 am

Thanks for the uplifting encouragement!!!

Wish everyone the best.

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