I can't read anymore... whew...will have to finish off tomorrow
I feel a little more educated thanks to everyone one here. I have a GP appt coming up and would like to discuss the new treatment buzz.
A part of me wants to rush to the closest participating doctor and shout for treatment....but that's not realistic now. It's sad in a way, we are all so excited but we know it's going to take a long time to become more widely accepted and available.
I am going to share a little printer package with my GP, a few articles and links as a primer. I won't be demanding tests, but I will say, hey look what's in the horizon.
I am also curious if we can present our case to the GP's as a vascular issue. If we introduce this treatment to the doc's with info on paper, how can we stress that a possible blockage/stenosis etc. may be an issue outside of ms?
What are symptoms of CCSVI? Are many of the symptoms the same as ms symptoms? Are there any unique symptoms? I have read about the "redface/hothead" when exercising theory here (sorry can't remember who to credit about that). Yes, in fact my first major damaging attack happened when I was exercising at an insane rate.
Recently, I have had heart palps, extra beats, neck swelling on and off, dizzy spells, one hot ear, strange sinus issues and face flushing. Could any of these items correspond to CCSVI? I suppose I can find other reasons for these issues, but just curious if anyone experiences similar things.
So as it stands, as a patient, we can't go in and say I think I may have CCSVI because of this......or that? We can only state look at this new find and most or all ms patients have a jugular/spine vein problem.
I think everyone should prime their GP with the new find and at least ask them to order testing when more radiologists are trained to know what to look for.
Can anyone think of an argument or point I can add to the appt?