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

Postby chrishasms » Tue Jul 28, 2009 8:54 am

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Postby Loobie » Tue Jul 28, 2009 10:02 am

chrishasms wrote:Hey Lew just our of curiousness...do you still have to cath or is that getting better?


I am still cathing at bedtime only. I really don't HAVE to cath to urinate. I still do most of it on my own. The problem is that I have actually two clinical things going on with my bladder; OAB and Detrussor/sphincter dissynergy. So what happens is I only void a small amount when I go by myself from the dissynergy. So my bladder, unless I cath, always has about 200-300 ml in it directly after I take a pee, so the over active bladder is just ready to fire up at any time! So my urologist warns that he needs me to peel some of that off of there so my kidneys don't get "backed up". Also, because once I get relaxed and it's time for bed, my bladder seems to get tired to and I barely get 50ml out when I get up to go pee in the middle of the night. So I do it at night time so I can get some sleep. I tried not doing it about two months ago and I was up not 20 minutes after I fell asleep.

Dude I have to tell you, I don't mind cathing just once or twice a day at all. It is kind of liberating because if I have to go to Walgreens or something, I'll cath and don't have to worry about having to go RIGHT NOW. It was so much easier when I still had my legs under me. I would go to Lowe's and huge stores like that. I still had the same urgency, but I could actually jog to the bathroom and just get back to shopping for a bit, then do that again if I had to. Now I can't get there quick enough and after a walk to the bathroom in a store, my legs don't want to keep going, so it's liberating in that it gives me more freedom in that regard. He wants me to cath moring, noon and night; 3x/day. I've only been doing it before bed, and will continue to do so until I actually start voiding a little bit more. As long as there is such a large residual amount left in there, it doesn't take long until it's full again. So in order to cut that out, I'll have to start actually emptying my bladder when I take a pee.

To your second post, that is what the first opthamologist I saw thought I had. He called it 'Exercise induced occular Ischemia' because it would only come on when I was playing racquetball and stuff. He didn't know about Uthoff's sign, but the next one did and he is the one who actually said "you might just have MS".
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Postby cheerleader » Tue Jul 28, 2009 10:18 am

Lew...
Jeff's noticed he's voiding more when he goes now, so he's having to go less. He had the urgent bladder/retention thing going on before stents. He sat thru a 3 hour Dodgers game last weekend, and didn't have to go. That was kinda miraculous. He's also up once a night tops, most nights he's sleeping thru. His issues hadn't progressed as much as yours, it was becoming more and more an issue, but the fatigue is what was killing him...so he hadn't paid as much attention to the change in his bladder. It's showing healing after a couple of months, so I'm fingers crossed for you, too.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mormiles » Tue Jul 28, 2009 10:41 am

Lew, I just read your latest blog and it blew me away. I had to call Steve at home and read him the whole thing. We're both giddy with joy for you and giddy with hope for his future. Congrats and thanks!
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby bibliotekaren » Tue Jul 28, 2009 11:12 am

Lew,

I read your blog -- am so happy to hear that you're getting symptom relief. Now I don't know you so I'll just mildly hassle you. Tilling in the sun for 45 minutes?! Egads, what were you thinking?! OK, I must admit I did some seriously stupid overdoing after my big surgery last year -- I really have no room to hassle you. When the possibility looms for reclaiming one's life, or even small fragments, it is an alluring force, eh? Hard to rein that in -- at least for me it is.

Anyway glad to hear about your improvement. Thanks for your welcome and response to my post on another thread.

Donna
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Postby chrishasms » Tue Jul 28, 2009 11:51 am

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Postby bibliotekaren » Tue Jul 28, 2009 1:41 pm

chrishasms wrote:Donna, what surgery did you have?

Not CCSVI surgery. To avoid hijacking Lew's thread, I'll refer you to my post on another thread. It wasn't really appropriate for that thread either but since it was well off the original highway, I followed suit with my long ramble trying to say I was interested in both checking out CCSVI and asking questions. Cheers!:
http://www.thisisms.com/ftopic-7751-105.html
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Postby Needled » Wed Jul 29, 2009 5:51 am

Lew, Yesterday's post on your blog was awesome!! It's so easy to get carried away when you're excited, but PLEASE be a bit more careful! Looking forward to your updates.
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Postby CureIous » Wed Jul 29, 2009 11:18 am

:)
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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 Loobie » Wed Jul 29, 2009 12:19 pm

I hope I can. I'm keeping the posts at once a week for now since daily ups and downs still happen for sure. I know just what you're talking about with the work thing. I start to do something and can hardly get past the beginning; so frustrating. Since I won't be doing anything as heavy duty as the tilling for a while, I probably won't see any big time changes for a while. Slow and easy for a few weeks anyway. The real stuff will expose itself when I get back to work and back into a routine. That starts Monday and I'll post what's happening no matter what it is.
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Postby Loobie » Wed Aug 05, 2009 5:42 pm

Just finished updating. Not much to say, but nothing getting worse, and a little bit to say.
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Postby Jamie » Thu Aug 06, 2009 5:18 pm

I believe you will have your left side done and then you will get the full benefit.

I'm glad you are all in.
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Postby Jamie » Thu Aug 06, 2009 5:21 pm

You'll be getting the good doctor straight after his trip to Europe for the big moment and knowledge share!
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Postby Loobie » Fri Aug 07, 2009 7:07 am

Man I hope so. During our last talk he was just adamant about really microanalyzing my condition on that side. Hopefully he comes across something. While I'm happy to not feel like I'm progressing, I'd sure like to join the "improvement party".
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Postby Loobie » Fri Aug 14, 2009 1:34 pm

Updated today - "Lew's screed on why the hell I'm doing this". Let me know what you think!
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