annbbe - second day after procedure

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

Postby annbbe » Sat Feb 06, 2010 3:20 am

hey, sunlounger, how are you? when are you going to have your next op?
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Postby Sharon » Sat Feb 06, 2010 3:26 am

wonky1 wrote
Soon you'll be impatient to wake up so you can see the changes a new day brings.


Prior to my procedure at Stanford, in the morning when I would get up I had a fear that something might have changed overnight. ... Now when I get up I am confident that the day is going to be just as good as the previous day and there is a chance it is going to be better.

The healing and repair process takes time, but I am sure it will happen for you.

Sharon
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Postby Billmeik » Sat Feb 06, 2010 6:34 am

You know I don't know if liberation will be shown to always create improvements. But if you know you're not going to get worse, then all you have is old damage to fix. Are any of your symptoms connected to old injuries or old hyoer-use? Like I play the saxophone professionally and last attack my hands went numb. My legs and toes didnt because i was jogging every day. To get my fingers back I'm starting to practice my horn again. Remember what you probably get is reorganization not remission. So your body figures out how to do old tasks in new places in the nervous system. Even though a neural pattern seems 'gone' it is held like a holograph in all the other patterns, so its mostly still there. Hoping is big. If you dream at night of something coming back, its actually your body practicing..
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Postby annbbe » Sat Feb 06, 2010 7:42 am

Thank you All, thanks Bill. This what you wrote here is so encouraging. I really feel that my body is trying to learn how to do old things in a new way...:)
Polish, 33yrs, dx 2000 RRMS, 2013 RSPMS EDSS 6.

liberated in february the 2nd 2010:). Currently just on LDN.
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Postby Billmeik » Sat Feb 06, 2010 9:09 am

that one stuck in my head like a burr. I think I have numb hands not because I played the sax but because I stopped when I reached 40. tons of nerve endings were trained on my fingers. Mylenation might be the way memory works. Demylenation might be forgetting. In MS an attack might target areas that you're doing some forgetting on anyways. Like bugs in a vegetable garden attack the rotting fruits and plants, maybe MS attacks the 'weak' areas (like injuries or forgetting)
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Postby sunlounger » Sat Feb 06, 2010 1:26 pm

annbbe wrote:hey, sunlounger, how are you? when are you going to have your next op?


hi annbbe,

I am still waiting to hear back from Dr Simka :?
My M.S is the same maybe slightly worse ....
I dont think the ballooning was enough to keep my stenosis open :(
Hopefully I will get a chance to come back to Poland in March for futher op where I think they will use a stent. :D
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Postby annbbe » Sat Feb 06, 2010 1:40 pm

Sunlounger, fingers crossed for you!:)
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Postby annbbe » Sun Feb 07, 2010 5:46 am

Hi, i am sad, because of my fatigue. I feel it once again (I didn't feel that when I was on Tysabri, but i havent taken infusion for almost 2 mnths...).
I wanted to try if i can manage without tysabri, but unfortunately no, i have to take it. Next week i have an appointment with my doc, and 13th tysabri infusion I hope...
Take care.
Polish, 33yrs, dx 2000 RRMS, 2013 RSPMS EDSS 6.

liberated in february the 2nd 2010:). Currently just on LDN.
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Postby alby » Sun Feb 07, 2010 8:15 am

sorry to hear that, hope it will all go well.
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Postby pgm1 » Sun Feb 07, 2010 11:03 am

Hi annbbe

I think this is worth a read and maybe try it and talk to your Doctor about it,this might help us all.
I posted this before but no one responded

Let me know what you all think i found it very interesting

Pam :)
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Postby annad » Sun Feb 07, 2010 11:16 am

Is there a link, Pam??
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Postby pgm1 » Sun Feb 07, 2010 11:32 am

Hi annad

Yes there is a link,OOPS Sorry about that

http://healingpowernow.com/

Pam :)
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Postby annad » Sun Feb 07, 2010 11:44 am

Thanks!
been there. . . . done that
:)
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Postby pgm1 » Sun Feb 07, 2010 11:49 am

Well what did you think ?

Pam :)
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Postby nicko » Sun Feb 07, 2010 7:03 pm

annbbe wrote:Hi, i am sad, because of my fatigue. I feel it once again (I didn't feel that when I was on Tysabri, but i havent taken infusion for almost 2 mnths...).
I wanted to try if i can manage without tysabri, but unfortunately no, i have to take it. Next week i have an appointment with my doc, and 13th tysabri infusion I hope...
Take care.


You had your op 4-5 days ago right? personally I would wait a few weeks before jumping back on tysabri. Your fatigue may come around on its own and you get to be pml free :) Just my opinion, but hey you know your body.
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