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

you all are amazing -- can I join you?

I just found this info last week, and the first night I could not SLEEP I was so excited. I have now tried to absorb everything you all have written on this forum. :-)

I've even dreamed about it. Last night I dreamed Janet Leigh was playing me in a movie about all this, and Dr. Dake was asking her what her transferrin levels were because that ...
Read more : you all are amazing -- can I join you? | Views : 2310 | Replies : 16


This is an old article from the bbc which I just noticed again, as it was in the most read or something... ... 498061.stm

I found l-citrulline is sold as a supplement and I wondered if anyone had ever tried it?
Read more : L-citrulline | Views : 1055 | Replies : 0

Talking points for dubious docs (and others!)

This has gotten some good response on the Facebook CCSVI in Multiple Sclerosis page, and I wanted to share it here (seems apropos!)

When bringing CCSVI research to your neurologist or physician, be prepared for the following comments:
(remember, your responses are given with a need for hostility. We want to get more doctors to look into the research.)

1. You can't believe everything you read on the internet!
A. The research has been ...
Read more : Talking points for dubious docs (and others!) | Views : 2916 | Replies : 16


Normally, I don't have much spasticity in my legs. But if I get very stressed (like at the dentist getting a cavity filled, or watching a really scary movie), or if I get real cold real fast, my right leg gets so stiff I can barely work it. As soon as I become less stressed, or I get out of the cold, the spasticity quickly dissipates.

Since CCSVI made the scene, I've come to think ...
Read more : Vasoconstriction | Views : 1610 | Replies : 8

Hello, WOW What a great board--now convince my wife

Hi, everyone. I stumbled upon this board and for the first time in years I actually am getting excited about the possibility of some improvement in my wife's MS. She was diagnosed in 2005 with relapsing remitting MS, multiple lesions and lumbar puncture confirmed the neuro's diag. Her original symptoms were blurry vision in the right eye which occured when overheated or stressed out and numbness on the left thigh. Her condition got worse over ...
Read more : Hello, WOW What a great board--now convince my wife | Views : 1555 | Replies : 9

Response of Italian MS Society

translated by google from original Italian- ... 9_09_ccsvi

my notes are in parenthesis-

Cerebrospinal chronic venous insufficiency (CCSVI) and multiple sclerosis

The cause or rather the causes of MS are still largely unknown, but research has made great strides to clarify the way the disease works and thus make possible an early diagnosis and treatment to enable people with MS to maintain a good quality of life. ...
Read more : Response of Italian MS Society | Views : 7276 | Replies : 59


Read more : 123 | Views : 1085 | Replies : 4

Dr. Dake's admission policy

I called Angela and she said Alex would call but it has been over a week. Dors anyone know how long the wait is? No doctor referred me, is this required? Are other tests required other than copies of MRI's? Please help!
Read more : Dr. Dake's admission policy | Views : 3595 | Replies : 21

Getting an MRV... Woot woot!

Not sure if this is where to start... But after learning of CCSVI a few days ago, I've been relentlessly researching this phenomenon. I spoke with my Neuro last night who believes this condition is epiphenomena related and doesn't apply to me, but still agreed to give me a script for the MRV. I do not have a medical background, but do have a critical eye and feel as though I have hope for the ...
Read more : Getting an MRV... Woot woot! | Views : 6069 | Replies : 36

Rokkit goes to Stanford

I've had the appt for a while, but I just bought plane tickets today, so I figured it was time to come out of the closet. Oct 5 is my date.

My case is a little unique in that I haven't been diagnosed with MS. I don't have MS lesions on my MRI. I do have oligoclonal bands in my CSF. I have a symptom history (including neurogenic bladder) consistent with PPMS. Dr Dake agreed ...
Read more : Rokkit goes to Stanford | Views : 4100 | Replies : 38


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