BAT SIGNAL - Urgent response desired!

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

BAT SIGNAL - Urgent response desired!

Postby Loobie » Wed Jun 17, 2009 12:09 pm

Hey all,

Well I'm in the middle of a damn relapse. I don't know if it's the heat, the stress of 'waiting my turn', or if it's just relapse time. At any rate, this one is nasty since my legs were already weak. They aren't doing well and I have one question, and the urgency is related to the fact that the home nurse will be here in about 4 hours!

My question is if SoluMedrol will affect this all or not this close to the procedure. I want to work right up to go time, but my legs aren't under me for a whole day. I've taken the afternoon off two days in a row now because I just can't go an entire day. They're understanding as hell at work, but I don't want to screw up my CCSVI op. I think Joan had already told me to go ahead with the 'roids, but I can't find the post and just want to make sure it's OK. In lieu of bugging Angela and having her track down Dake, do any of you see an issue with going ahead with this?
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Postby peekaboo » Wed Jun 17, 2009 12:46 pm

did you pm marie or cheer?



Dr. dake is very accessible...call him he would not mind :!: :!: :!:
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Postby cheerleader » Wed Jun 17, 2009 1:27 pm

Go ahead with the steroids, Lew....they'll make no difference to Dr. Dake, and you need to get the inflammation down NOW.
Sending prayers and light,
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby cheerleader » Wed Jun 17, 2009 1:34 pm

Another thought, Lew...
you just had MRIs with contrast....drink LOTS of water, make sure your kidneys have help clearing the gadolinium. Keep body temp. cool, crank the air con. Deep breaths, buddy. You'll get thru this one. The IV steroids are good, they relieve the inflammation right away, they are a vasodilator, they will get your blood moving. It won't affect your test results or ability to have a procedure. Just get thru this....
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Terry » Wed Jun 17, 2009 3:04 pm

Gotta answer the bat signal even if I have nothing to say.
Damn, Lew, even in a relapse, you still have a sense of humor!
Feel better!
bbbbbbbbBatman!!!
Terry
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Postby Loobie » Wed Jun 17, 2009 3:12 pm

Thanks for the quick response guys. Good to know it's ok as the home nurse will be here any minute. I'll see if she can't IV me some sterile water in my other arm to flush out the GAD. I'm not having a good time. My wife is at work (12 hour shifts now) and my daughter is hungry. Looks like P,B & J and apples for dinner :roll:
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Postby Sharon » Wed Jun 17, 2009 3:22 pm

Lew - sorry about the relapse --was glad that Cheer got back to you so soon. Take it easy - do some deep breathing - breathe into the lower chest/upper abdominal area. This affects the parasympathetic system which will help to calm your nervous system down.

PB&J - sounds okay to me

Take care,
Sharon
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Postby skydog » Wed Jun 17, 2009 4:07 pm

Stay Cool Lew... Your gonna be OK !!! Yes lots of fluids, good pure spring water if you can. Watch your PH levels. Organic veggies and vegetable juices are great. Flood your body, like a river. Were pulling for you dude. Hope we cross paths in July. Cheers Mark
Plant a BIG Garden Live in the Moment
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Postby mrhodes40 » Wed Jun 17, 2009 5:08 pm

Not quite the same but I am allergic to iodine so Dake gave me 240mg roids just before surgery...............

Deep breaths to help drain the veins too..... Soon you'll be other side of it.

:D :D
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 Islandgirl » Wed Jun 17, 2009 8:34 pm

Loobie- You have one more person pulling for you. Islandgirl
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Postby akaheather » Wed Jun 17, 2009 8:54 pm

Hang in there Lew! You're almost up.

H
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Postby Jeff_wMS » Wed Jun 17, 2009 10:42 pm

Hey Lew - hang in there. Sorry to hear about the relapse, hope the steroids get you back on track. So glad you will be making a trip out to get tested.
you are in our thoughts and prayers,
Jeff
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Postby whyRwehere » Thu Jun 18, 2009 1:42 am

So, I am always a day late (being in a different time zone). How are you feeling now?
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Postby Loobie » Thu Jun 18, 2009 5:33 am

"nana nana nana nana BATMAN!" What a difference a day makes. I took my first dose at 8:00 last night, didn't sleep too well, but I feel totally different. Reset a year almost. This stuff has never worked like this for me before. I don't have any pain in my feet and legs right now and the big thing is it doesn't feel like my hamstrings are being caned like I stole a car in Singapore :D . That was the scary part, the back of my thighs were feeling so weak and tight that every step was really unsteady. A 5 mph wind gust would have pushed me over. Not today thank the Big Guy.

I am actually taking heart how well this worked as it makes me feel like I'm still having inflammation and thus maybe am still RR. I think we all do this, but I just put it off and put it off until I just can hardly function because I don't want to be having a relapse. I can always find a way to struggle through my job. Yesterday by 9:00am I could hardly keep my balance and kept getting up and then sitting right back down again. I ended up shutting my door and just peeing in coffee cups because I didn't feel I'd make it to the bathroom! All I can say is wow, this has never had this profound an effect on me, they really helped last time about a year ago, but not like this. Anyone have any home improvement projects they need done this weekend? :lol:
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Postby Loobie » Thu Jun 18, 2009 5:34 am

And thank you, thank you, thank you for all of your support.
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