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

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Postby zipfed » Mon Nov 09, 2009 10:22 am

While I have been lurking for a while so I thought I would introduce my self. My name is Jason I am 36 and I was DX'd almost 1 year ago RRMS and found the CCSVI info about 2 months ago so I am scheduled with my PCP the 23rd to get a refferal to Stanford then hopefully that portion can happen quickly, luckily I live just north of Phoenix so Stanford is not to far of a drive for me and my wife.
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Postby ozarkcanoer » Mon Nov 09, 2009 10:29 am

Good luck, zipfed !!!! It would be so great if your neurologist is open-minded about CCSVI.... Please keep up posted...

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Postby whyRwehere » Mon Nov 09, 2009 12:58 pm

I think he is getting referred by his general practitioner and not a neurologist, which is probably the best idea.
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Postby kinga » Mon Nov 09, 2009 1:12 pm

hello zipfed! good luck with your Stanford appointment!
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Postby zipfed » Mon Nov 09, 2009 1:45 pm

Thanks everybody, and yes I am getting referred by my GP as I cant even get my neuro to return my calls most of the time.
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Postby ErikaSlovakia » Tue Nov 10, 2009 2:37 am

whyRwehere wrote:I think he is getting referred by his general practitioner and not a neurologist, which is probably the best idea.

I also went to GP and before to an angiologist. My neuro is my friend, but I still have not tol her a word about CCSVI.
Only one neurologist in Slovakia wants constantly more info from me, which is very good, she is young, she speaks very good English, I go to see her tomorrow.
Another neurologist is from Prague - my ex teacher. He also wants more info, he finds it positive.
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 CRHInv » Wed Nov 11, 2009 8:32 am

Hi Zip! I'm Beth, I'm from chandler. I am sitting in Stanford medical center right now waiting to see Dr. Dake and get released. I'm not an expert or anything, but if you ever want to chat, feel free to pm me. Take care!
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 grant » Mon Nov 23, 2009 8:33 pm

Hi Zipfed and CRHinv,

I am Grant and I live in North Phoenix. I am extremely interested in trying to get in to see Dr Dake.

Can you give me some information about how you approached your Dr and how you got into Stanford?

I hope you don't mind if I PM you both.

Thanks,

Grant
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