Good idea, SJ. I'm attaching what I have now. Anybody feel free to simply take this very rough draft and post a modified version.
"The purpose of this thread is to get an overview of the experiences of patients getting tested for CCSVI and those who are getting treatment (ballooning, stents, open neck surgery, or other), be it in Italy, Poland, USA, or elsewhere. Now there has been a "patient log" thread already, but it ended up loosing structure as newbie's and other's who got exited commented on patients logs. Here we hope to collect as many accounts as possible, neatly organized without interruptions so that newbie's and others can get an overview of diagnoses and (if applicable) side effects and subjective as well as objective efficacy of treatment.
So, the idea of this thread is to have ONE POST PER PATIENT, each of which will hopefully be updated regularly using the "Edit" feature, basically however often patients like (though probably not too often as this might make the long term development hard to follow). Edits should be to the point and can include past MRI and other test results, CCSVI testing results, experiences with (if applicable) treatment and post-treatment medications, and symptom development.
For the sake of keeping the thread neatly organized, we ask others to refrain from posting comments on patients logs. Comments outside of CCSVI accounts will be erased by the moderator.
Please let me know if you think I'm missing anything and I'll update this intro post to reflect it. Thanks!"
I think it might be good to start the thread with an example patient history. I could do it in principle, as I'm still hoping to get tested at some point, but it might be better if one of the "oldtimers" starts.
Last edited by radeck
on Sun Feb 14, 2010 2:45 pm, edited 3 times in total.