This Is MS Multiple Sclerosis Community: Knowledge & Support

I had my MRV in Poland last week and believe that it may show collateral veins in my neck which are apparently indicative of a blood flow problem or two.

I have no idea what is considered normal, and have nothing to compare my MRV with (i.e. a healthy subject) so if anyone out there would care to offer any comments I'd appreciate it. I guess I'm just looking to find out whether this picture does indeed confirm a problem, or not....

Thanks.

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

No personal offense intended, but I ask myself if it is a good thing to ask such questions here. Diagnosis belongs to the professionals - the right professionals that is, Zamboni, Simka, Haacke, Dake et al.

There's very little media coverage of CCSVI in germany, but the few articles already tell that people exchange adresses of some docs, in a way that you can read between the lines that the author wants to say that this isn't a thing run by professionals. How does it look like if the next article says that laypersons "diagnose" each other on the internet? Makes a bad impression, I think.

Just my 2 cents.

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"There is only one good, knowledge, and one evil, ignorance." Socrates

Perhaps I need to be a little clearer here and expand on why I’m asking. I’m certainly not looking for a diagnosis per se as I already have one from Dr Simka himself.

I have received some images from the MRV and corrective procedure done during my trip to Poland last week. I would now like to take this ‘data’ to the doctors and Neuros in this Country and say look, here is hard evidence to support the CCSVI hypothesis. But I have nothing to compare my MRV scan to and I just want to be absolutely sure that it highlights a definite problem before I put it in front of a doctor or Neuro, just in case they dismiss it as completely normal. This is the sort of bad impression that I’m trying to avoid.

Now that I’m liberated, I’d like to think that my images will be sufficient grounds as to why I need to be checked regularly here in the UK in case of re-stenosis, but for now I just don’t know how valuable these images are.

Make sense?

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

Hello Mutley,

definitly makes sense

But I think if you show the pictures of your VEINS to NEUROS, it will be as good as showing them to your electrician.

I think the only by all means successful thing would be if you show the pictures of before and after your treatment to a vein expert.

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"There is only one good, knowledge, and one evil, ignorance." Socrates

Neuros don't know how to read MRV's see if another Vascular dr can have a look over it.

I fully appreciate that but since we are now lobbying our Neuros to consider that MS may well have a vascular component, it would be nice to take supporting evidence to the next meeting with my Neuro. Perhaps this might be a picture of an MRV for a healthy subject, and a picture of mine so that they could at least see a visible difference. But that only works if I know that my MRV is indicative of venous abnormalities.

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

I totally understand, I was just suggesting to get the view of a vascular specialist before taking it to the neuro so that not only do you get the confirmation but maybe that vascular dr could actually speak to your neuro to confirm. I have a vascular specialist who might look at it for you but he is so far not a believer in CCSVI and felt my MRV's were normal (after looking at it with a neuro, so would not do a venogram) but I am a very very mild case so I think those with more severe MS might have more obvious issues. I also believe if he had done the invasive venogram he would see issues. I don't know how helpful he will be.
(I will PM you)

Hi Mutley
That's a great idea. I haven't done it either though. Mine looks like a tangled ball of string but for all I know that's just normal. I think the significant point is they are white. As far as I remember that means theres movement of blood and shows "time of flight" if the jugulars were doing their job properly, then who needs peripheral veins, I'm obviously just guessing though . I was fairly dozy when Dr Simka explained it all.
I like your idea of a liberation bash, count me in

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!

I mean this is very early days and look how many MS'ers are writing into this forum, hungry for information......Now where's the 'professionals' to supply knowledgeable, sensible support? ? Or is that a really stooopid and niave question? javascript:emoticon(':oops:')

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.....

YEAH! ROLL ON LIBERATION GET TOGETHER! javascript:emoticon(':idea:')

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.

All best,
Naomiac