mysterious symptoms

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

mysterious symptoms

Postby cervocuit » Sun Jun 28, 2009 11:06 am

Hi,

I'm French boy of 29 years old. I’ve got ms and all this call me out because of my background.
When I was 18 (1998), I woke up one morning with very strong confusion and vertigo that made me vomit about ten times during morning. It happened two mornings, those two past nights, I was sleeping on the back with the head straight, looking at the ceiling. The doctor sent me to an ear specialist for vertigos but nothing here, then a cardiologist who made me a Doppler of my jugulars… I haven’t found the paper of this exam but I remember that something was wrong when he ran his device on the left side of my neck. I was able to ear the blood flow from his computer, and for the left side, it was barely audible. At the end, he said that the left one was very weak, but the right one compensate for it. So there was nothing to do. I didn’t investigate much. I just stop sleeping on the back since.
3 years after, I had ms symptoms and then over the years, sensitive, vision problems, numbness in members, with an average of 1 relapse/year and always associated with fatigue.
When I was dx in 2003, my neuro linked the 98 vertigo symptoms with ms.
The strange thing is that I always have those first symptoms when I raise my head. It’s like when you get up quickly after a long sitting or lying down position. Sometimes it’s very strong: I’m blind and I can’t do anything for about 10 sec.
The experience of ms made me reappraise this. I don’t know if some of you have ever experiment those symptoms or if you know something about that but when I asked my neuro 2 years before, he said “no, this is not ms doing that …” I didn’t ask more.

Thank you all for talking about that, I think I will investigate for this now.
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Postby cheerleader » Sun Jun 28, 2009 11:29 am

Welcome, cervocuit-
I am glad you have found this discussion. It appears that your doctor found reflux or blockage in your left jugular vein, but felt it was not important. New research is showing us that venous flow is important. I would suggest that you and your doctor contact Dr. Franceschi with your doppler results. He is familiar with CCSVI testing, and has written on Dr. Zamboni's research. He might be able to examine you and see if CCSVI is part of your illness:

Dr Claude Franceschi, Vascular Laboratories of Hospitals Saint Joseph and Pitié-Salpétrière, Paris, France; claude.franceschi@wanadoo.fr

wishing you good health and answers,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby cervocuit » Sun Jun 28, 2009 2:59 pm

Hello Cheer,

Thank you for the informations. I'm happy that somebody in France is involved in this. I'm going to see a new neuro and i will talk to him about this. Since now I didn't care about my health so much because my ms was not so agressive but now i've got symptoms who freaking me: bad balance, bad coordination, and since the beginning of summer, i can't stay upstair more than 10 min without need to sit. I don't support avonex and my previous neuro wanted to give me rebiff ...
I really hope that MS means complication of CCSVI. I will contact dr franceschi soon to learn more. Maybe he will do new exams.
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Postby Jamie » Thu Jul 09, 2009 1:46 pm

Make sure you are persistent and don't accept 'non' !
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