I started a blog

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

Postby Needled » Fri Aug 21, 2009 6:07 am

Hi Lew, I have been reading your blog but forgetting to tell you. Sorry about that. It's really well written, I like your style. Like your posts, you make me laugh, cry, be sad, happy, think and everything in between.
Your last post about your shoulder problems hit home. Ugghh... I've lost count of how many times I've dislocated my shoulder. There are 2 peices of good news me for -- 1) I've figured how how NOT to move it so it doesn't pop out and 2) I got tired of going to the ER to have them put in back in, so I figured out how to do it myself. Anyway, I feel your pain on this one. I know how much of a mental drag it is, and how much it hurts and how uncomfortable and cumbersome it is . Even after it's back in, you might still get those phantom twinges where it feels like it's out again. Anyway, please keep up your blog, it's good reading and very informative, and a great way for you to look back and track your progress.
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Postby mormiles » Fri Aug 21, 2009 6:28 am

Needled wrote:I have been reading your blog but forgetting to tell you. Sorry about that. It's really well written, I like your style. Like your posts, you make me laugh, cry, be sad, happy, think and everything in between.


D I T T O from me.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Loobie » Fri Aug 21, 2009 7:37 am

Thanks for the feedback guys!
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Postby Jamie » Fri Aug 21, 2009 9:17 am

and me

you're a good writer.
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Postby Loobie » Thu Aug 27, 2009 5:19 pm

Another post is up. I used some of GiCi's posts with his permission.
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Postby Loobie » Thu Sep 03, 2009 6:11 am

Sorry it took me so long to get back Chris. Yes I am still cathing. I couldn't make it through the night still without doing that.
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Postby Loobie » Thu Sep 03, 2009 6:11 am

Blog updated 9/3!!!
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Postby Rokkit » Thu Sep 03, 2009 8:02 am

Excellent post as usual. I've been wondering though about you guys on the coumadin. And maybe after katelyn and catfreak go today we'll know more, but if he's not putting anyone on coumadin any more, can you guys ask to just go off it now?

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Postby catfreak » Thu Sep 03, 2009 9:42 am

Lew, I am reading your blog while waiting to be called back for my procedure.

Did your Neuro consider your RRMS or SPMS? Just wondering since you had some major relapses.

Great Blog by the way!

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 Loobie » Thu Sep 03, 2009 10:52 am

Now that I have been declining (not lately) with no MRI activity, he 'officially' calls me SPMS, but with the caveat, "we can't be sure, and does it really matter?".
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Postby mrhodes40 » Thu Sep 03, 2009 3:58 pm

Lew my neuro said almost the same exact thing. :roll:

My old neuro had avoided the SP diagnosis though I had been sure for some time, his claim was copaxone was suppressing MRI activity but I was still RR. The new guy was not on that story line at all....

I think us patients cling to this stuff like it is written in stone somewhere, as if by assigning the right names and numbers we can somehow get ahold of it, put it in a box and finally understand the inexplicable robbing of our abilities..........

but what's in a name when they didn't even understand this was a venous issue not an autoimmune one?

RR is all about "active inflammation caused by the immune system"

SP all about "neurodegeneration after the active inflammation is gone, a residual of the autoimmune phase and (according to some) after the inflammatory phase is done"

all of this means nothing if it is CCSVI. I will be interested in how this material comes out with time.
But I hope the phrase SPMS disappears from the lexicon of MS stuuff to know and worry about.
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 Jamie » Thu Sep 03, 2009 4:03 pm

I hope the phrase 'MS' disappears from the lexicon.
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Postby CureOrBust » Thu Sep 03, 2009 5:17 pm

mrhodes40 wrote:but what's in a name when they didn't even understand this was a venous issue not an autoimmune one?
....
all of this means nothing if it is CCSVI.
Until CCSVI is confirmed, it makes a difference if anyone wishes to be involved in a non CCSVI trial, some specifically exclude SPMS patients.
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Postby LR1234 » Thu Sep 03, 2009 5:45 pm

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.
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Postby catfreak » Thu Sep 03, 2009 6:26 pm

This is totally unfair to those with SPMS. Just for results that make them more cash.

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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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