I am so impressed with all this research into CCSVI and sympathise with all the MS'rs out there who just want a clear way forward.
Now, the brilliant Dr.Zamboni has used both his compassion and his brain and come up with a much more plausible and logical explanation of a complex brain condition! It is early days but looks like it has fantastic potential for 'MS'ers. 'Change Gonna Come' as Sam Cooke said! And I love that Ghandi quote, by the way!
(I have always thought multiple sclerosis is a blanket term that neurologists apply to anyone with a brain/nervous system condition that they really don't understand and has never been covered in their training in any thought provoking manner. The brain is so vast (like the universe) and it takes a brave, clear, confident and clever person to think originally on the matter so Big Respect to Dr. Z!)
I have been diagnosed 'benign MS' after an acute onset and no subsequent episodes over 10 years except for one tiny relapse of blurred vision a month after my initial onset (so how did they work out I had 'MS'????). I have chronic fatigue, bad headaches, mild congnitive problems (scatty, poor short term memory, can't follow through basic structures/patterns sometimes) I had to stop working, as a result. No neurologist has ever looked into my particular presentation in any detail, they simply labelled me and left me to pick up the pieces. Sadly, I know this is not an unfamiliar story and one which is shocking as we enter the 21st century!
Like many of you, I jumped at the chance of an explanation to my complications and soon found a hospital in the UK to do a doppler scan on my neck. He told me it was normal then did a little research and called me back to do some extra tests - nice guy and seemed interested (which is the most you can expect at this point, I guess). I had told a friend of mine with 2ndry progressive and she booked a scan with the same guy back to back with me. We both had one. Mine, again was 'normal'. Amazingly, hers was 90% restricted and the Dr said he found this 'very interesting'! Now, she obviously eager to get this fixed but there is, seemingly, no treatment available for at least 2 years (Dr. Simka) and certainly no neuros here (UK) to oversee/support/organise the procedure. Phew!
As for me, I am eager to proceed to stage 2 of the tests and have an MRV scan done as I intuitively feel Dr. Zamboni's theory of MS as a venal problem, restricting blood flow to the brain, a much more likely explanation than the immune attacking myelin sheaths. I mean - where's the research to prove this theory? ? ?
MS'ers know so much more about their condition than any professional and i always find it moving that they jump into action and research pretty complex medical areas and have to explore these pioneering areas, pretty much in isolation. Brave,or what?!
So where are some baby Neurologists out there with passionate and enquiring minds who are pioneering enough to get this relatively straightforward procedure deeloped???? And if there are any Neuro's out there who fit this description.......don't be scared, just get out there and prove something amazing, fantastic and life changing!
Somebody said we should have a liberation day and all get together. I think that is a fantastic idea - and get the press to come down - Safety and numbers and all that. The world needs to know about this and act!
In the meantime, I'm looking for a place in London to have and MRV scan and was deflated to hear that you need to know what to look for, even though no one seems sure of what to look for. Thanks to Mutley for flagging this up! Back to the drawing board.....
If anyone wants help organizing something, let me know. Or I am willing to organise a get togethr, here in London. Any ideas, please let me know.