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

Out of pocket costs related to CCSVI at Stanford

Those of us who are considering the procedure would appreciate knowing what kind of costs we are looking at for the initial days at Stanford for diagnosis, treatment, and through the 2-day follow-up visit.

Here is a link to a survey I have created. Please let me know if I need to add any questions or make any changes. I will post the results periodically on this site and will download the results to anyone ...
Read more : Out of pocket costs related to CCSVI at Stanford | Views : 2255 | Replies : 10


CCSVI - do you think exercise would help?

Okay I'm newly diagnosed and immediately started trying to learn all I could about MS and any approaches that may help. At first CCSVI seemed too much to take in (too much info and medical talk makes me feel like my head is going to explode!), but now that it's been awhile, I started looking into what CCSVI actually is and what I immediately noted was that is has something to do with poor blood ...
Read more : CCSVI - do you think exercise would help? | Views : 5159 | Replies : 31


Tracking project pls respond

As you may know, our forum is followed by many people who never post but who read our materials with interest.

It may surprise some to discover that some of these people are interested physicians.

One of these people has contacted me and suggested that our tracking project would be more valuable if we used the MSIS-29 instead of the EDSS. This person also suggested that we include the Fatigue Severity Scale (FSS).

These are ...
Read more : Tracking project pls respond | Views : 2874 | Replies : 20


M.E/CFS

I got a magazine on M.E research this morning (as I subscribed when I thought I had M.E). They have discovered abnormal blood flow in the brains of M.E patients as well.

M.E symptom wise can be similar to MS except they do not have lesions and they can recover fully. Usually there is no progression with M.E

I wonder if M.E will be proven to have issues with jugular veins. I bet they were ...
Read more : M.E/CFS | Views : 1084 | Replies : 4


Question about incision site for CCSVI

My question is this.
After the surgery, do they make you lie flat to let the incisions heal? Where do they do them exactly?

I ask because right now...
1. I can't lie my head down flat. I get the spins and freak out.
2. I can't put my feet down flat because of the problem with my legs and feet. They have to be elevated pretty high (above the heart) at all times.
3. ...
Read more : Question about incision site for CCSVI | Views : 1560 | Replies : 9


CCSVI Surgery & MS Constipation question

So, I have MS as we all know. I have had constipation on and off for 4 years. Recently, I can go for 7 days and lately 10 days without going. The only thing that helps is taking a Senna, which I don't like or recommend. It's not comfortable and you can imagine why. My constipation is not a blockage or based on what I eat. I can eat prunes, fiber and bran and fruit ...
Read more : CCSVI Surgery & MS Constipation question | Views : 3091 | Replies : 24


Anyone have spasms in just one leg? Anyone taking Tizandine?

3 years ago a general neurologist thought my spasms in right leg were due to RLS and prescribed Requip that worked well but just for a few weeks so I discontinued. 2 years ago I saw an MS specialist who said it was NOt RLS because it was only one leg. He was not interested in talking about what it might be. He also said I did not have MS and to just go work ...
Read more : Anyone have spasms in just one leg? Anyone taking Tizandine? | Views : 807 | Replies : 0


Anyone have spasms in just one leg? Anyone taking Tizandine?

3 years ago a general neurologist thought my spasms in right leg were due to RLS and prescribed Requip that worked well but just for a few weeks so I discontinued. 2 years ago I saw an MS specialist who said it was NOt RLS because it was only one leg. He was not interested in talking about what it might be. He also said I did not have MS and to just go work ...
Read more : Anyone have spasms in just one leg? Anyone taking Tizandine? | Views : 1033 | Replies : 3


My CCSVI Theory for common MS Symptoms - need feedback

I have a theory after doing a bit of research on CCSVI and common symptoms of MS including anxiety, ear problems, constipation, etc.

Doctors are currently doing a study on CCSVI (if you aren’t familiar, see here http://brain.hastypastry.net/forums/sho ... 418&page=2) and they found that all folks diagnosed with MS had blockages in either one of two areas. One is the jugular vein and the other is a vein in ...
Read more : My CCSVI Theory for common MS Symptoms - need feedback | Views : 1566 | Replies : 4


CCSVI in U.K?

Please point me in the right direction.
After having PPMS since '97 I'm really stirred up by this new discovery.
Please give any advice you can regards how I can have this investigated and if necessary treated in the U.K.
I am seeing my G.P. next week and will try my best to get her interested in it.
I will be taking along prints of the documents recommended by http://csvi-ms.net ...
Read more : CCSVI in U.K? | Views : 1935 | Replies : 13


 

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