Ok, I'll start by providing a link to my post in the tracking thread to provide some background info, rather than copy the info into this thread:
In a nutshell, here's the situation:
22 year old male, living in Melbourne Australia. Somewhat minor cognitive and fatigue related symptoms which started a few years ago. First major relapse in August last year, unable to walk, loss of bladder/bowel functions, basically everything from my waist down. I'm able to walk and jog again (can't sprint though), regained most feeling, still patchy from my knee down. My other symptoms have definitely gotten worse since the relapse though.
I have had the doppler scan, which came back positive for CCSVI. Next week I have an appointment with the interventional-radiologist, but he has been forced to stop performing the procedure (I swear, if I find the twats that snitched on him....) I have hope though, I may be able to travel interstate for the procedure, which is much better than going overseas.
I decided to make this topic because I know how easily posts get lost in the tracking thread. And unless you check back weekly, checking on a particular post, you can't tell which people have given an update.
My symptoms occur daily, and fluctuate/change by the hour, so I will know if I see any improvment. Like i mentioned in the tracking thread, cog fog is my biggest issue. I was ridiculously sharp, quick witted and aware of everything a few years ago, now I just seem to be out of it for most of, if not all day.
I will be able to gauge any cognitive improvments quite well, as I play a rhythym game called DJ Hero regularly. It is similar to Guitar Hero, but it is alot more involving. Here's a video showing someone playing the hardest song in the game, if you watch it till the end, you will see how hard it becomes: http://www.youtube.com/watch?v=xaAjJG-c65o
There's a crossfader which needs to be moved to the left or right. Buttons which need to be pushed to match the beat. The arrows are scratches, where the corresponding colour button needs to be held down, and the turntable needs to be moved in the direction/pattern that the arrows show.
When I bought this game 6 months ago, without being arrogant, I was very good, probably top 20 in the world. At the moment I avoid playing it, due to it being a constant reminder of how much I'm slowing down.
Another thing I might add: Why do I believe CCSVI is linked with MS? Any improvements that I've seen, have been either when:
- I changed my diet (very strict, little to no saturated fat)
- Or when I started training 6 days a week (weights 3 days a week, high intensity cardio/sprinting 3 days a week).
There's alot more snippets of info I wanted to post, relating to changes in lifestyle and how it affected my symptoms, I can't remember them at the moment though.
So this thread is here to post my experience with the procedure, and for me to make daily, if not weekly updates on how I'm doing. I know how eager everyone is to get more updates from patients, and I think more people should be giving regular updates on their condition.