This Is MS Multiple Sclerosis Community: Knowledge & Support

I am frustrated. And I must admit, that part of my frustration may be because of the type of person I am. I have been an RN for almost 40 years. Trained the "old school" way in a Diploma RN program and then years later went to a University. I seem to be the type of person that has a thirst for medicine.... the hows and whys. Frequently over the years I have been known to read medical texts "for fun". Call me odd but its just the way I am.

I am frustrated at the Neurology community. I am baffled at the lack of curiousity that they have. as individuals and as a group, about CCSVI.
I know they are busy physicians and cannot possibly be up on every "snake oil" cure that promises pwMS relief of symptoms or even "cure". But hey this CCSVI thing has been around for a while now.

They do seem to have enough time to give lectures at dinners sponsored by drug companies and to accept "honorariums" from MS Charity organizations. Certainly with the complexity of the drugs available they must spend a good deal of time educating themselves on these drugs.

Am I remiss in thinking that they should be curious enough to actually read the CCSVI 'white papers" ? Am I wrong to expect that they should know more about CCSVI than the biased articles that appear in the Neuro Magazines?

So far I have told many of the nurses and pharmacists and doctors that I interface with in my day to day life (both work and personal). Most of these people, no, let me correct that, all of the healthcare professionals that I tell about CCSVI seem very interested. They all ask me for a website or ask how they can find out more about it. This leads me to wonder just why the group of physicians that are most effected( the Neurologists) simply appear to be "dis-interested"?

Both of the neuros I have been to with my daughter were obviously misinformed and seemed to have very little of the facts correct. Quite frankly it made me annoyed. I hope they couldn't tell, but I was.

When will these Neurologists read the studies? When will they take more than a fleeting interest? Don't they have an obligation to? Will it happen after the results are known from these double-blind studies?And why do you think so many are reluctant to? I always thought the best and brightest medical students became Neurologists and Neuro surgeons........you would think they would have a normal dose of curiousity when something so big has the possibility of impacting their specialty so much?

I guess I just wonder what you all think are the reasons? And perhaps any neurologists that may stop in to TIMS and read this could tell me why there isn't more interest?

I am not expecting the Neuros to accept CCSVI as the cause of MS, but there seems to be no question of its connection to MS.

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Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

.

You need another option on there to cover Emma's Neurologist's thoughts:-

"Knows nothing and thinks it's nonsense, wants nothing more to do with it."

I think the results of a double blind study is what they really want. Or some other kind of study by a reputable institution with strong numbers and methodology that has been peer reviewed and published in a reputable publication.

Ann

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always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.

The leading Oxford MS neuro has written against CCSVI. Lets see if the MS Trust magazine will allow me to respond against her.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Mark,

Are you referring to the neuro that the two of us share? Can u please post the reference or link of her views on CCSVI?

Thanks,

Rox

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Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.

Sorry, I can't vote. My neuro falls in the same category as EJC. He's not interested and wants nothing to do with it!!

So far I had a succession of complications which gives him amunitions...
I, myself, am still very excited by it!!! My next procedure is in 8 days, time passes very slowly... just like a kid before Christmas!

I hope to prove him wrong at my next appointment in January!
S

Hello Rox,

The Oxford MS neuro view is expressed on:
http://www.mstrust.org.uk/information/o ... _06_07.jsp

I do not see the MS neuro you saw any longer. I have had MS for nearly 20 years so (in their view) my only hope is to see the MS rehab Prof. At least he is much more open minded.

Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Thanks Mark,

When I complained to my docs that I was having excruciating daily migraines I was told that migraines were not common among MS or TM patients. Mmm. The migraines went away after CCSVI treatment.

Here is what the Oxford neuros say taken from the link you shared (thanks! I had not seen it before!).

CCSVI theory: an update
Dr Lucy Matthews, MRC Clinical Research Training Fellow,
Dr Jacqueline Palace, Consultant Neurologist
John Radcliffe Hospital, Oxford
Open Door - November 2010 pages 6-7
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Our comments

"Although the early findings may suggest an association between MS and abnormalities of the venous system, it is important to test this theory further in independent studies. The first of these independent studies have not reproduced Zamboni's results. Furthermore, if a valid link is found, it will need to be established whether the narrowing is a cause of MS, or alternatively due to the effect of MS.

It should be noted when interpreting the findings of these studies that it is very difficult to blind the investigators carrying out the ultrasounds to whether the subject has MS or not, and this could influence and bias the results.

Certain conditions can obstruct the draining veins of the brain (eg a clot or a tumour). The symptoms caused by this obstruction include headache (a specific type related to raised pressure), raised pressure in the spinal fluid and haemorrhage associated strokes. These symptoms are not seen in MS, and conversely conditions that obstruct the draining veins in the brain do not to our knowledge produce symptoms typical of MS.

The MS science community has however realised the importance of pursuing this novel theory, and trying to establish its relevance to people living with MS."


I think that is a balanced view (wait for more research on relationship between MS-CCSVI). Some might recognise one of the above neuros as was involved in the so called "the biggest MS trial fiasco" on the CRABS meds.

http://www.independent.co.uk/life-style ... 91104.html

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Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.

I have no idea

Never crossed my mind to talk to her about it. I am not being nasty- I just never "used" my neurologist to treat my MS, only go get the paperwork for Disability, placards for my car, etc.,

You might have guessed in, I don't believe in CRAB's

I took a memorystick with me with 50GB of documents, studies etc - he downloaded it in a flash and was real happy I had brought it along. This is about a year ago.

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dx 2002,RRMS,  suspected begin of MS 1978 (age 10)

The Neurologists I have spoken to know little about CCSVI, and are absolutely determined not to find out about it. The voting options should include outright hostility as well as differing levels of knowledge of CCSVI.