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

Postby CRHInv » Thu Oct 15, 2009 3:30 pm

Thank you, Thank you, Thank you!!
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Postby Loobie » Sat Oct 17, 2009 8:39 am

It is done!
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Postby bestadmom » Sat Oct 17, 2009 8:52 am

Great post! It's great to hear of your contiued improvement, especially being SP. It gives me hope.
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Postby Loobie » Sat Oct 17, 2009 9:20 am

It's slow bestad, real slow, but hey, I don't seem to be getting worse, and that's just huge. It seemed like week to week I could notice negative progression before this.
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Postby bestadmom » Sat Oct 17, 2009 9:44 am

I'd say that stopping progression is a good thing, in light of the alternative. Any improvement is icing on the cake. I think that once the autoimmune attack component is halted, that stem cells will be the answer for repair for those of us who might not show improvement.
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Postby radeck » Sat Oct 17, 2009 11:18 am

While most important is no more progression, I hope you'll also get better in the long run. Don't even stroke victims (where there's widespread neuronal damage) have some degree of recovery of function? Isn't this done through the bodies own stem cells, just taking longer than if you inject them in large quantities?
Last edited by radeck on Sat Dec 19, 2009 2:00 pm, edited 1 time in total.
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Postby chrishasms » Sat Oct 17, 2009 11:26 am

123
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Postby radeck » Sat Oct 17, 2009 11:30 am

Why would RevImmune be needed, instead of just injecting the autologous stem cells, i.e. those from your own body? Seems to me that ablation of the immune system doesn't really help with anything during the progressive stage, but maybe I'm missing or misunderstanding something.
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Postby CRHInv » Fri Oct 30, 2009 3:18 pm

Hope things are going well.
I hate to be such a pest.... but.... any chance for an update?
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 Loobie » Fri Oct 30, 2009 4:39 pm

I'm planning on doing it this weekend. I've had a touch of something and it has made me feel like baked ass. It's gone now and I still feel like baked ass. My PT session tonight was very hard, but I need to get over whatever bug I had. I only felt 'sick' for one day and that was a couple of days ago. I hope things pick back up because I'm supposed to pick up an elliptical tomorrow! Thank you for reading though, it makes me feel good to know people actually do! :D
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Postby cheerleader » Fri Oct 30, 2009 4:48 pm

Loobie wrote:I'm planning on doing it this weekend. I've had a touch of something and it has made me feel like baked ass. It's gone now and I still feel like baked ass. My PT session tonight was very hard, but I need to get over whatever bug I had. I only felt 'sick' for one day and that was a couple of days ago. I hope things pick back up because I'm supposed to pick up an elliptical tomorrow! Thank you for reading though, it makes me feel good to know people actually do! :D


Did you get the flu, Lew? Our kid had a bad virus, and Jeff had a mild version of it, but he felt pretty crappy for several of days. Of course, that freaked us out (FLOWERS FOR ALGERNON!!! OH, Noooooo) But he's better since yesterday and back to his energizer bunny self. Give yourself a couple more days to recover. You guys can still get sick, and that can still make you feel like "baked ass." I'm sorry, but where DO you get your "interesting" phrases, Lew? 8O
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Fri Oct 30, 2009 6:11 pm

I pull them out of...........never mind :lol:. Yeah, I hope it's just a bug, but like I said, I don't feel sick, but it could be lingering.
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Postby Loobie » Wed Nov 04, 2009 5:54 pm

Updated 11/4
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Postby Needled » Wed Nov 04, 2009 6:34 pm

Sending you tons of good juju! :lol: :lol: :lol: :lol: Can't wait to hear how you do and your impressions of Dr. Haacke and his team. And going by yourself? That's tremendous. You've come a long way, Lew.
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Postby CRHInv » Wed Nov 04, 2009 8:21 pm

Yeah! Thanks for the update. Here's to things that don't suck!
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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