Oh what a week I'm having!

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

Oh what a week I'm having!

Postby Loobie » Wed Nov 25, 2009 8:41 am

OK, most of the detail is going on my blog post later. I have a pretty cool story to tell that has surprised me in a big and good way. As you all know I've been doing "pretty well" here as of late. Finally have had enough accumulation of little things that have resulted in me having to admit that it's changed for the better.

So yesterday I got my hardest test to date and was sure I was going to backslide. Monday night was 2 weeks out from me quitting the weed. Lots of people have always said "there are no symptoms to MJ withdrawal". That was in the 70's and 80's when you could smoke a whole joint and still function. Even the junk stuff today would have been considered "the bomb". So I've been having some pretty good symptoms after smoking that stuff EVERY SINGLE NIGHT FOR 15 YEARS. Not the least of which has been mild anxiety (expected, so blown off) and insomnia. Well monday night I fell asleep at 3:00am and woke up at 4:30am, and this is after the last two weeks not getting much more than that.

So I had this absolutely can't miss work day as one of my dies was being run off for approval. Which meant I had to be on my feet a great deal of the day, walk back and forth to the press it was in (about 200 yards to my office), and generally operate at a major high stress level with customers present and feedback needing to be given; picture a chicken with it's head lopped off. By the end of the day my ass was dragging. My voice was weak, my throat was sore and my knees started to hurt pretty good. You guys know that's one of my leg problems that know me. Well I did manage to get the job done, but felt like a pile of shit at day's end. So my MS brain is thinking "wow you did that, but the next couple of days are going to be absolutely horrible". I even told my boss I probably wouldn't be in.

Guess what? Today is my best day I've had since the surgery and well before it obviously. It's unbelievable. I am not dizzy, my eyes are clear, my feet don't hurt, my legs don't hurt, my knees don't hurt, my head doesn't hurt, I'm thinking really clearly, blah, blah, blah. It's magnanomous. About 5 months ago, not only wouldn't I have not been able to do even 1/8 of what I did on 1.5 hours of sleep, but after waking this morning, I feel freakin' great. You guys know how cautious I am to post good news so you know this isn't me just having a good moment. This is all stuff I would have been incapable of doing a very short time ago. If this keeps up, I swear I will be jogging again soon. Can you freakin' imagine that? I can't even believe I'm saying it. I feel so balanced between my two legs and can stand firmly on both feet, it's just amazing.

Just getting that little sleep a few months ago (on top of not sleeping well preceding that day) would have definitely trashed me just sitting in front of my computer at work, if I even came in at all. I'd have been awash in vertigo, ON and brain fog; let alone all the balance and coordination issues and spasms upon getting up from my chair. I could go on and on about what this feels like. I keep thinking "no way this is real". If I was doing any better today I'd be twins.
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Postby Rokkit » Wed Nov 25, 2009 8:51 am

Wow! That is the most awesome thing I've read in a while. I am so happy for you! This just rocks.
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Postby Needled » Wed Nov 25, 2009 9:01 am

That's just tremendous!! I can't possibly imagine doing so much in one day, and then on top of it all not feeling like a dead person the next?? It's so encouraging, and I'm so happy for you. PLEASE keep the news coming.
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Postby kinga » Wed Nov 25, 2009 9:03 am

Oh ,I'm sooo happy for You!
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Postby zap » Wed Nov 25, 2009 9:04 am

If you have continued sleep troubles, you might look into melatonin supplements for sleep ... MJ does a number with our natural levels of it, and it may be helpful for getting to sleep at night. Not sure but it popped into my head when I read your post.
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Postby skydog » Wed Nov 25, 2009 9:36 am

Awesome ole Buddy! I am doing great also. Brenda is still holding a tight reign on the leash Dr. D's orders. Keep on improving. You might try to schedule your day in a way that you wind down a bit more before bed time. Get that sleep! its when we heel most. Cheers, Mark
Plant a BIG Garden Live in the Moment
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Postby ErikaSlovakia » Wed Nov 25, 2009 9:49 am

Loobie! That is just 8O :D 8O :D
I am happy for you!
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby javaneen » Wed Nov 25, 2009 9:53 am

Yippie! Yay! I am so happy for you!
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Postby ikulo » Wed Nov 25, 2009 10:08 am

double thumbs up!!
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Postby cheerleader » Wed Nov 25, 2009 10:28 am

Great news, Lew! The one thing we've learned here is that my Mr. type A started feeling so good he pushed it 110% everyday this fall, and that's when it eventually caught up. Make sure to take time for exercise, fun, relaxing and live life in balance. Power naps are good, too!

The shortened recovery time is EXCELLENT news. Keep us posted!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby ozarkcanoer » Wed Nov 25, 2009 10:28 am

Loobie... as we used to say in the 60s... that is soooo groovy !! :D
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Postby Loobie » Wed Nov 25, 2009 10:38 am

Thanks guys! I can't even describe what it was like to have work be in the forefront of my thoughts, not MS. That was so groovy :wink: . That is when I know this really has done the deed. When family and work and life are in the foreground and MS is in the background. That will be an incredible feeling when that day comes (fingers crossed)
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Postby bibliotekaren » Wed Nov 25, 2009 10:39 am

Excellent report -- glad to hear it!
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Postby CRHInv » Wed Nov 25, 2009 10:57 am

When family and work and life are in the foreground and MS is in the background

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 Arcee » Wed Nov 25, 2009 11:52 am

Lew, just awesome! Looking forward to seeing the improved you. Enjoy the holiday.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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