Monday, June 7, 2010

Happy with Liberation?

A new discussion thread has been begun by "scorpion" on TiMS ( that some of you might want to follow.  Basically, he is asking the liberated:
How are you feeling? Do you agree with the the posts on this forum calling for a rebellion against the MS Society, neuros, and pharmas? Could what you are experiencing be a placebo effect or are you positive you are experiencing improvements due to the liberation procedure? Is there anything that you can identify that has gotten worse since the procedure? Would you recommend people go off theie MS medications? Have you changed your way of thinking, in a positive or negative way, about CCSVI?
There are some fairly good responses in that thread already.  My own response was:
I was "liberated" April 29th, almost six weeks ago. I did not notice any sudden and miraculous improvements at the time. A couple of weeks after the procedure I noticed some increased strength on my weak left side. My daily energy levels have slowly increased to where I can schedule and look forward to doing several tasks in a row rather than building up my energy to just do one thing. The physiotherapist checked me today and I seemed to have improved a bit in my mobility and balance since the time my benchmarks were set a few months ago. I cannot say, however, that these are not placebo effects. Ask me again in a year, because the real test of the benefit of CCSVI treatment, for me, will be if my deterioration has stopped.

I am not pleased with the attitude and actions of the MS Society of Canada, and feel that if the same Board with the same attitude gets elected, the organization risks become irrelevant to MSers in this country.

I am disgusted with those neuros that dismiss the whole idea out of hand without actually studying the issue. I am angry that Canadian medical organizations have forced vascular specialists to stop doing their jobs just because a patient has MS. However, I don't want all medical professionals to be tarred with the same brush, because some are quite open-minded about the possibility of a causal link between CCSVI and MS and, while recognizing that this needs a lot of study, also understand that MSers who are deteriorating quickly need to make timely treatment decisions.

A pharma exists to make money. I don't have to be conspiracy theorist to recognize that their goals may not always coincide with mine.

I am still on Betaseron, but will discuss with my neuro (who is currently studying the information I brought back from Katowice) whether I should continue the medication.

Given the information I had and the information I have up to today, I did the most logical thing when I became "liberated". I would hope that all MSers could be assessed for CCSVI and then given the option to be treated locally.


  1. Bonjour,
    J'ai la sclérose primaire progressive dianostiqué depuis mars 2008. La vitesse que je
    perd mon autonomie ( déambulatuer, problème orthophonique, difficulté à avaler etc) je pense que vous avez raison à 100%. C'est vrai qu'il ne sont pas tous méchants mais ils devraient plutôt avoir une collaboration et une compréhension afin de nous aider au lieu de toujours mettre des bâtons dans les roues.

    P.S. je trouve cela extraordinaire de pouvoir vous suivre sur le blog et d'avoir des informations pertinentes.


  2. Merci, recoulem. J'espère que vous êtes bientôt capable d'obtenir le traitement et commence votre guérison.

  3. Liberation is a start. There is still a lot of work that people need to do, from nutrition to physical therapy, to harnessing their new found energy. I wrote about that here.