annbbe - second day after procedure

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

Postby Nasti » Sat Sep 04, 2010 5:06 pm

Ann

I am happy to hear of your recovery.
I am a similar case like yours, 27, got dx in 2000 as well, had my liberation in Bulgaria in June.
I feel my symptoms from time to time, esp when I am tired, but my energy level is better, I am not tired of life anymore. :)
However, I am still on ldn. I am afraid to give them up. They did wonders with my energy in 2007, got my life back, and i am afraid to let them go. So if Tysabri gets too expensive, maybe you can try LDN, a tremendous help with energy.
Postprocedure, I had a slow recovery as well, but I am ok now, so things are starting to turn up for the better. :)
Best wishes,
Nasti
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Postby annbbe » Tue Sep 07, 2010 7:47 am

Hi TIMS's Friends!

My physical state is currently going better and better. Yesterday still I wasn't able to take this heel-toe walking test at all. And just a day later - today I am almost ready to take this walk. Just a day later!

I couldn't believe it, so I sat on my exercice cycle and started to pedal to check my strength. And it is better as well!

I am 7 months after left jugular vein angioplasty, I feel the more and more healthy:))).
Polish, 30yrs, dx 2000 RRMS, EDSS 5.

liberated in february the 2nd 2010:). Currently on double blind clinical trial with Avonex/Daclizumab.
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Postby annbbe » Tue Sep 07, 2010 7:57 am

Nasti wrote:Ann

I am happy to hear of your recovery.
I am a similar case like yours, 27, got dx in 2000 as well, had my liberation in Bulgaria in June.
I feel my symptoms from time to time, esp when I am tired, but my energy level is better, I am not tired of life anymore. :)
However, I am still on ldn. I am afraid to give them up. They did wonders with my energy in 2007, got my life back, and i am afraid to let them go. So if Tysabri gets too expensive, maybe you can try LDN, a tremendous help with energy.
Postprocedure, I had a slow recovery as well, but I am ok now, so things are starting to turn up for the better. :)
Best wishes,
Nasti


Nasty, Hi!
You know what? I would like to give up Tysabri, but I am afraid a bit too. I improved so much...I don't want to loose it (but I am not sure if Tysabri is still working for me). In my opinion what is going on at the moment it is liberation effect.
Polish, 30yrs, dx 2000 RRMS, EDSS 5.

liberated in february the 2nd 2010:). Currently on double blind clinical trial with Avonex/Daclizumab.
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Postby annbbe » Sat Apr 02, 2011 5:09 am

Hi, I went to Katowice, Euromedic yesterday. It turned out, that 14 months after procedure, my veins are still open.

Wow!

It is so great to be in those 45% of patiens who don't have restenosis so far;).

Next control in a year!:)

Take care!
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Postby Cece » Sat Apr 02, 2011 8:07 am

congrats annbbe!!!
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annbbee

Postby blossom » Sat Apr 02, 2011 9:43 am

great to hear you are doing so well and you have good flow. are you still improving?
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Postby Pepe » Sat Apr 02, 2011 11:53 am

Hi Annbbe,

¡¡¡Congrats Annbbe!!! María is doing very well too since the CCSVI's intervention on January, 2010. No reestenosis so far. Only improvements. Two weeks ago she told me she was able to write on the computer with her left hand fingers again. That's true: You and María are very lucky...so far.

¡¡¡Take care!!!
¡¡¡Best wishes!!!
Pepe.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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