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

My Turn!

I leave first thing Thursday morning. Testing scheduled for Friday 10/16. Consult and procedure scheduled for Monday 10/19. I do have to admit a case of nerves has hit me. I think it has more to do with leaving my family and traveling alone, than with the treatment. I wanted to post now because I'll be tying up a million loose ends tomorrow. I'll post my journey. Wish me luck!
Read more : My Turn! | Views : 3891 | Replies : 35


CCSVI treatment coming to the east coast...soon......

This was posted on msworld.org forum and the poster gave me permission to crosspost here:

"Went to an MS Conference this morning...

I'm a nurse and this morning, I was told by our wonderful neuro fellow that Patricia Coyle MD was giving a lecture on MS today. So went and she promised at the beginning of the lecture that she was going to "drop a bomb" about MS later on. She went over the usual ...
Read more : CCSVI treatment coming to the east coast...soon...... | Views : 2394 | Replies : 14


CCSVI Wikipedia typos in English version

Sorry if this has been mentioned already, but . . .

There are many glaring typos on the Wikipedia page for CCSVI in the English version which makes me think there is a problem with translation.

The info presented should also be checked for accuracy by someone more knowledgeable than I.

The page mentions MS briefly, but nonetheless, if this procedure is to be taken seriously, then the page should be corrected.

Some people here ...
Read more : CCSVI Wikipedia typos in English version | Views : 1205 | Replies : 2


Neck problems, tension shoulders, etc and CCSVI

I don't know if this has been disgussed here, but in Finnish forum there was some talking about neck problems, feeling of pressure in head, tension in neck/shoulder area -- and CCSVI? Is there any connection between these?
Looks like these pressure feelings in head and tension neck are quite common in MS?

- Ernst, who just massaged wife's neck :wink:
Read more : Neck problems, tension shoulders, etc and CCSVI | Views : 3139 | Replies : 12


Why not list CCSVI on Patients Like Me as a treatment?

There are some posts about CCSVI but no members report this as a treatment.

Is there a specific reason why CCSVIers are not using that site to report? I find it a helpful site.
Read more : Why not list CCSVI on Patients Like Me as a treatment? | Views : 1401 | Replies : 6


What does INR stand for?

What does INR stand for?
Thanks
Read more : What does INR stand for? | Views : 1074 | Replies : 3


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 : 2250 | 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 : 5150 | 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 : 2869 | 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 : 1082 | Replies : 4


 

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