Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby ewizabeth » Mon Oct 12, 2009 12:40 pm

Thanks Lauren,

I've had 31 infusions now so I'm not too far behind you! :) I already take Provigil, and I'm trying to stay with only 200 mg in the morning. My MS neurologist recently switched my antidepressant to Lexapro and I'm feeling a bit more energetic. So I hope that was all I needed.

I also tried the new medicine called Nuvigil and it didn't work until I tried to go to sleep that night, then I tossed and turned for two hours. 8O

So, things are a bit better and I hope to stay on the Tysabri until something better or a pretty effective pill comes along.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby CNClear » Mon Oct 12, 2009 1:58 pm

I tried Provigil but it did absolutely nothing for me, unfortunately...so now I take Adderall and sometimes, it works and sometimes, I can take it and go right to sleep...must act differently in different people...

Lisa
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Postby ewizabeth » Mon Oct 12, 2009 3:22 pm

Hi Lisa,

I can't take Adderall because it affects the blood pressure, so I'm lucky that Provigil works for me. I find that if I take a day off on the weekend, it works better as well.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby acol » Wed Nov 18, 2009 9:51 am

Earlier on in this thread (April 28th) mention was made of a symposium which was held at New Charing Cross hospital in London. I think that it was 'cheerleader' who commented that Dr Dake met Dr Zamboni at that symposium. I wondered whether anyone has a link relating to that event? In particular I would be very interested in getting a list of the British vascular surgeons who attended the conference. Any information would be gratefully received.
Nigel
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Postby mrhodes40 » Wed Nov 18, 2009 10:40 am

The research thread page one post 2 has links to things related to Dr Zamboni.

Here's a little bit to whet your whistle:

links to Cheerleaders posts from Bologna

Link to Cx symposium information and Dr Zamboni's Hilarescere Foundation site

links to Dr Simka's website and papers

Images of an actual patient

I try to add anything related to actual research there so if you can't find something you will get it there
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 acol » Wed Nov 18, 2009 3:14 pm

Hi Marie

I have re-visited all the links on page 1 - very useful posts, thank you, in particular this link - http://www.ms-info.net/evo/msmanu/984.htm Do you know whether Dr Schelling hosted the conference or was it Dr Zamboni? I still haven't discovered the exact date of the Symposium or the names of the UK participants. I suppose that I could contact Dr Zambosi, Dr Schelling or as a last ditch resort Charing Cross Hospital. Obviously, I was hoping to discover an on-line list of people who had attended the symposium.

My reason for wanting this information is to help me draw up a short list of Vascular Surgeons in the UK, who have shown an interest in CCSVI.

I will re-read Cheerleaders notes from Bologna to see if I can find any clues there. Everyone is so helpful on these boards.
Nigel
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Postby cheerleader » Wed Nov 18, 2009 3:38 pm

Nigel-the Charing Cross Symposium hosts vascular doctors from around the world on a variety of topics...Zamboni was one of many speakers last March. He was the only one speaking on his discovery, CCSVI.
Here is the Charing Cross Vascular Symposium website-
http://www.cxsymposium.com/
There are many people on the forums trying to get doctors in the UK on board.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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PPMS query

Postby Trent » Fri Nov 20, 2009 4:54 am

Hi,

I'm probably out of order here, but I have PPMS of 35 years, I'm 68 and don't want to wait any longer! Are there folk out there with PPMS, 100% wheelchair dependent who have benefitted from a stent? If so how much improvement has the treatment made?

Chris
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Postby radeck » Fri Nov 20, 2009 9:11 am

Hi Chris, according to Zamboni's trial (which should be published next Tuesday) it takes longer on average for progressive patients to notice an effect, about a year or so.
Last edited by radeck on Sat Dec 19, 2009 9:26 pm, edited 1 time in total.
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Postby acol » Sat Nov 21, 2009 3:49 am

cheerleader

Thank you for your reply and the link. I hope that at some time in the not too distant future we will begin to hear about vascular surgeons in the UK who have the necessary skills and interest to pursue these procedures. In all probability this will only occur when CCSVI becomes much more well known.
Nigel
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Postby kiara » Sun Nov 22, 2009 3:08 pm

This is just a simple thought, it seems to me that regardless of whether or not a person suffers from MS, (which I do) it can't be a good thing to have hampered blood flow anywhere in our bodies, so it seems to be a no brainer that drs. should be treating this issue. Whether or not it causes MS seems to me to be mute point.
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Postby Punchy » Mon Nov 23, 2009 7:46 am

I am sorry, with a newborn baby I don't have time to search through this entire thread - does anyone have information about the Buffalo study mentioned in the W5 documentary?

They said they're taking Canadians...

Thanks!
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Postby ErikaSlovakia » Mon Nov 23, 2009 8:45 am

Punchy wrote:I am sorry, with a newborn baby I don't have time to search through this entire thread - does anyone have information about the Buffalo study mentioned in the W5 documentary?

They said they're taking Canadians...

Thanks!

Hi there!
http://www.bnac.net./
Say hi to you baby! :D
Erika
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 Terry » Mon Nov 23, 2009 6:38 pm

with a newborn baby


Punchy!!!!

We want to see!!!! Pictures please!

Girl or boy?

Name?

Congratulations!
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Postby Algis » Mon Nov 23, 2009 9:10 pm

I know I should not ask that question but:

How could I get things done knowing that I am in Taiwan? Should I go throughout the Neurologist - knowing that this may slowdown the process; or trying to see a veins expert (name?) - knowing that he will probably not understand what I'm talking about?

Or should I take vacation in Poland 8O (Zubrowka and Cracow sausage, mmmhh) and see Dr.Simka/Ludyga ??

Any advise appreciated,

Algis
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