I started a blog

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

Postby Loobie » Fri Sep 04, 2009 5:59 am

LR1234 wrote:I think SPMS usually signifies those that have more damage and had the disease for longer which is probably the real reason why they are excluded from trials as they don't make the best statistics.


You win the cookie on that one. I think that's totally it. I talk about that on my blog all the time about the people they choose to 'speak' about the CRABS. They've all only had it one or two years! I would have made a GREAT statistic at that phase of the game.
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Postby Loobie » Wed Sep 09, 2009 10:41 am

Well I put my last post up until I go back to Stanford.
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Postby LR1234 » Wed Sep 09, 2009 10:47 am

Good Blog Loobie x
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Postby Loobie » Wed Sep 09, 2009 11:03 am

Thanks Leanne
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Postby CureIous » Wed Sep 09, 2009 11:07 am

:)
Last edited by CureIous on Sat Oct 03, 2009 3:52 pm, edited 1 time in total.
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 catfreak » Wed Sep 09, 2009 12:00 pm

Lew,

You always know how to put things in perspective. I hope your trip to Cali is a positive one and Dr D has just the ideas he needs to deal with your issues.

I had one narrowing / stenosis that he did not stent. Who know what effect that will have on me and it I need more work when I go back.

We, of course, will have you in our prayers.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby bestadmom » Wed Sep 09, 2009 12:06 pm

Lew,

Good blog post.

I hope your Cali visit is productive and also hope it's the coumadin that is making you feel not so great, since the week b4 you posted that when you skipped it you had your best day in 3 years.

Michelle
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Postby CRHInv » Wed Sep 09, 2009 12:08 pm

I'll be thinking of you, I hope Dr. Dake finds something, something big, and gets you on your way. I really want this for you and your family. Thanks again for all that you share.
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Postby CRHInv » Fri Sep 25, 2009 9:25 am

Sorry to be a pest... but I am hoping you update your blog today!!
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Postby Rokkit » Fri Sep 25, 2009 9:38 am

Me too!
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Postby Loobie » Fri Sep 25, 2009 9:51 am

I was actually planning on waiting until Wednesday because I go see a physiatrist about my shoulder. It's overshadowing everything I think I would be feeling and is starting to piss me off :lol: . But seriously, I want to wait until I find out what's going on with that nerve because I actually feel pretty damn good if it wasn't for the shoulder. My eyes, dizziness, lots of it. So maybe I'll post an update about that! Yeah, that's the ticket! So I think I'll do that tonight, although I'm leary about saying "I am feeling different in a good way, but this shoulder pain is masking it" and then realizing I don't feel that different after it gets better. But I may do it anyway, I had two friends call me last night to talk about the golf outing that's being thrown for me as a fundraiser and they were like "update the blog!", so I think I'll go for it tonight and try to make it interesting as I'm about to start taking LDN as well and have some stuff to write about that.

You guys should go to http://ldners.org and see what SammyJo has done in terms of LDN advocacy. Talk about a hard worker, she even wrote a book! I'm pretty excited to add something that I think could maybe help my brain heal, and the conclusions I've drawn about it say there's a possibility for LDN to do that. Thanks for gigging me, I've also been pretty caught up with stuff going on at work, so I guess I didn't realize I haven't posted yet this week.
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Postby Lyon » Fri Sep 25, 2009 2:30 pm

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Postby Rokkit » Fri Sep 25, 2009 4:08 pm

I think a physiatrist is basically a rehab doctor.
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Postby mrhodes40 » Fri Sep 25, 2009 4:11 pm

ding ding ding!!!

rokkit gets the prize.........

I'm seeing a physiatrist for my neck too--working great
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Lyon » Fri Sep 25, 2009 6:14 pm

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