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A Crazy idea to try in combination with CCSVI liberation...

Posted: Sun Mar 21, 2010 4:06 am
by CureOrBust
Remember, I have no medical training, the following is simply my own crazy thoughts.

In simple terms, CCSVI would appear to be based on the condition causing BBB isues and the corresponding iron deposits, and then immune activation... blah blah....

Steroids are perported to "shut down" the BBB permeability. I have been using a pulsed prednisone regime, and personally think it has helped (there was at least one study that found it beneficial, specifically to SPMS and PPMS). I see it as a "manual" way to quickly shut down the BBB and also settle any current immune acvtivation. This would sound to me to be beneficial after treatment.

When I speak to the doctor who will be performing my "lebration", I will be specifically asking how soon before and/or after the ballooning will I be able to do a steroid pulse.

Has anyone here who has had CCSVI treatment tried a steroid pulse?

Timing Important

Posted: Mon Mar 22, 2010 5:50 am
by MarkW
I do not find this idea completely crazy and would like to hear the results. A word of caution on mixing steroids with blood thinning drugs, get someone who knows to advise you especially on timing (consider washout times).
Kind regards,
MarkW

Posted: Tue Mar 23, 2010 3:41 am
by CureOrBust
The mix of steroids and the treatment and any other medication is already on my list to ask Prof (late April for initial consult, hopefully may to June for any intrervention). When I do steroids, i feel better for a while, but it slowly fades back in, it will be interesting to see if any CCSVI treatment affects it coming back in :?

As for the blood thinners, I note some people do not get put on them. See Downunder's post at http://www.thisisms.com/ftopicp-99727.html#99727