This Is MS Multiple Sclerosis Knowledge & Support Community

Hi, it's been a while since I posted but we haven't been idle. We had a talk with our new neurologist, Dr Judith Frayne, who happens to also be on the ethics committee and is aware of Prof T's work. She told us that her understanding of the outcome of the committee meeting was that no CCSVI related ...

hey everyone! long time no see. Just thought i'd pop in and give you an update. my wife Katz is doing really well, recently had a MRV to check for restenosis (after a confusing report from Melbourne Radiology) and it's all good news. The fatigue is still gone (as much as possible for someone current...

hi folks been a while since i've had a chance to get on here. wanted to say quickly that it's wonderful to see all these people with improvements. thought i would share ours. katz' improvements have been fairly low key but we have a little 13-month old who has been a bit crook (just the flu) and als...

hi dean_b, remember that melbourne radiology also don't test your azygos (spinal) vein, which dr Z has implicated in CCSVI as well. best thing for you to do is to go to your GP and get a referral to Prof. T... he is a very nice man and I'm pretty sure he will help you on the basis of those results. ...

ok, am hugely knackered but really want to write this stuff down. katz had a really great day today, still very tired (baby waking up several times during the night will do that) but she woke up with much more energy and was able to go through the day much longer than normal. but it's not necessaril...

hi all, just a quick note to say that we had the procedure with prof. T today ... everything went well, right jug was not blocked but left jug was "definitely abnormal" and was ballooned. not much to report as far as the MS goes, but i would like to write down what to expect -- except that...

hey cure, katz also has an inverted valve (according to the doppler) and prof. T wasn't fazed, he said they would pull a balloon through it and it would "pop" back into the right direction. i'm not sure that he used the word "pop" but i'm also not sure that he didn't :) do i reme...

awesome that they let someone in ... now i can go in with my girl and hold her hand! :) that's really great to know. helen you must be seeing prof. T just after we get out of surgery! looking forward to hearing everyone's stories. where's adolfo? probably out playing footy, or hang gliding, or somet...

Hi Kerri Thanks for sharing the details. My wife is going in on Tuesday and we are very excited. (Well, I'm excited and I think she's a bit nervous). Good to hear that Prof T has reduced the time to one hour... will let her know that, I think she was worried about it, especially as she is super sens...

adolfo, this is wonderful news! the fatigue and waking up exhausted thing is our hope for katzi's semi immediate relief from the op next tuesday... the fatigue is awful, especially with a one year old to look after. also hoping that the symptoms of her current relapse will reverse quickly (skin pain...

great news my man! can't wait till tuesday week for katzi to go in and have a go.

sounds like you've had some positive experience already .. might just be the endorphins tho.

do you have fatigue? will be interesting to see how you sleep tonight.

cheers
m.

just letting folks know that my wife had her first appointment today with prof. thomson (after getting her positive results back from dr jules at melbourne radiology). prof thomson took one look at the results (posted here a few pages back) and scheduled the ballooning straight away. it's been a lon...

Hi folks My wife just had her doppler done at melbourne radiology and the results were amazingly encouraging. Who'd have thought that hearing that my wife's jugulars are completely stuffed up would be the best news I'd ever had? here are her results... sorry for the crappy transcription.. note that ...

I like the EAE model. The thinking goes like this: 1. MS might be an autoimmune disease; 2. Let's create an artificial autoimmune disease in mice and call it EAE; 3. EAE looks a bit like MS; 4. Therefore, MS is an autoimmune disease. See? It all makes perfect sense. I can think of several diseases w...

hi folks anyone who can't get to the documents via mobile me should just PM me with your email address and I'll shoot it through to you. I'll set it up on a better host when i have a chance... BTW, Taxi, don't you Aussie's watch the Supper Bowl? I realize it is a different kind of football and all ....