This Is MS Multiple Sclerosis Knowledge & Support Community

elliberato wrote:

scorpion wrote:

leooreo wrote:someone is taking out my posts. Why - I have right to post my opinions. Real facts is we need. not people from ms society - scanning the posts.

Scorpion - have you been tested for ccsvi?

No I have not and I am not interested in getting tested. As of yet I have seen nothing to convince me that CCSVI even exists and if it does that it has anything to do with MS. Other people have different opinions and that is fine. If more research is done and an association between MS and CCSVI is shown and it is proven that "opening up veins" stops progression or cures MS I will be the first in line.

You have a point SCORP. It seems you hear all about how people are excited prior to their procedure but then after they have it you never hear from them again? Whats up with that? It seems to me the results have much to be desired...I for one had the procedure almost 7 months ago and continue to decline...

Hope it's fine to add my two-cents...

If the people who were excited before their procedure are not heard from again after being treated...it is possible that these people are playing catch-up and happily living their newly-improved lives.

After losing so much to this illness and then having to go through all the stress that we have been under in trying to access CCSVI treatment, one can understand anyone just wanting to break free from what was and embrace what is.

Let's hope they are busy making the most of this hot and humid summer now that they no longer suffer heat intolerance, rather than imagine their health is in decline.

Once the procedure is done, people are no longer in the planning and the decision making stages, which are when the support and information here is especially useful.

[
b]Results of CCSVI study available[/b]

An important study on CCSVI is underway and early results are available


There have probably been over 100 Canada MS Patients treated for CCSVI by now. Each will have reported back or will soon be reporting back to their attending neurologist.


Neurologists keep good records of symptom progression.


The study taking place is the compilation of those ongoing assessments.


The data is there and the database is growing.


With MS, it has been impossible to predict the future but the past is known and one of the big questions with CCSVI treatment is does it improve conditions over what was there in the past. Does it improve conditions over what is known to occur with a placebo effect?


Those questions can be answered tomorrow.


Put a call out to the relevant neurologists and their patients. Tally the data.


Is the Government doing this work? Is the MS Society? Is the association of Neurologists? Is anyone?


I would like to know what has been going on.


CharlieC