This Is MS Multiple Sclerosis Community: Knowledge & Support

Exactly! Other causes besides theorized autoimmune disorder with no known antigen for which there is no direct test, thus making it a disease of exclusion. Rather inconvenient.

I can see a day when testing for CCSVI is the direct test, if CCSVI and MS do end up being inexorably tied together with CCSVI causing MS. We're not there and it's not certain, but I like the sound of it.

Bluesky--that's what I did for Jeff. Between his GP, a Lyme specialist and his neuro, we went thru them all. Negative on everything. His GP was a terrific resource, ordering the APS (Hughes syndrome) test, vitamin B, and all the pertinent blood work. His CSF was tested for viruses and bacterial infections, special test for Lyme, no stone unturned....some we paid for, some insurance paid for. And then dignan posted Dr. Zamboni's research.

Wheelchair Kamikazee writes about his diagnostic mystery case on his blog. He's been seen by the best and brightest, and still no definitive answer. I hope you have some good docs willing to go thru the list, Sky. We need more patient advocates who can help pwMS thru the maze.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Ironically, today's PubMed search came up with two relevant publications:





I'm not a proponent of the "space and time" criteria. Since lesions are just physical manifestations of an underlying disease, it shouldn't be a diagnostic criteria. That's like going to a doctor and telling him I have leg pain and it gets worse over time. There could be any number of causes. Even the lumbar puncture doesn't necessarily narrow down the diagnosis since O-bands can occur in a number of diseases, as Cheer has pointed out in the past.

taken from the NMSS information web page :

On autopsy .... they have found brain lesions .... on people that had no record of suffering from any MS symptoms in their lifetime.

in other words .... there are many people running around - fully functional- that have brain lesions ......

Go figure .




Mr. Success

That is an interesting thought, MrSuCCess. If we can trust the diagnostic ultrasound or Haacke protocol MRV to be separating out the people with CCSVI from the people without it, then wouldn't it be interesting to look for brain lesions in the people with CCSVI. This would be the healthy control group, MS patients excluded.

Hi CeCe - just read the NMSS article on the new McDonald Criteria ...
they ramble on about getting a quicker MS diagnosis .... esp . those with a clinically isolated episode ....... without sacrificing ..... accuracy ...

But .

Isn't this whole MS - CCSVI thing .... all about accuracy ?

seems to me ...... jaded old bugger that I am ....... that the real goal is to get pwMS on the drug train .... as fast as they can.....

times a-wasting ...... let's get them started quickly on our stuff !


Can you elaborate a bit on your post [ above ] , CeCe ?




Mr. Success

I have lots of confidence in my diagnosis. It was done by a radiologist just after doing my MRI. He said there must be a "disconnect" because the last guy (who was an opthalmologist) had not told me my MRI indicated 'MS'. He sent his report to my neuro, who told me.

I realize now one of the reasons for that might have been the new requirement for basically two different MRIs and two attacks, allowing the meeting of the "dissemination in time and space" requirement. The same guy had probably done both MRIs, and was surprised because here I was having another, with the same (actually worse) result.

They have to be careful to meet these criteria because they are what justifies them telling your insurance company they need to pay the exorbitant amount the DMD mfrs get. Who else could afford it?

The radiologist may have taken pity on me because I had been at this merry-go-round for 15 years, with three neurologist on four occasions (one was a repeat) and the ophthalmologist, and 3 GPs and the nerve conduction guy. This was my 3rd MRI - I even had one done on my neck (!) in '89 when they were pretty new.

So knowing how long this can take (I must have had all 100 blood tests) I was not really serious about my clinical trial idea...

I just don't have much confidence 'MS' is what they thought it was. Which means I have even less confidence in DMDs. How can you modify a disease whose cause is unknown? A good trick if you can. In my view it was a failed experiment.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

this is so interesting and it seems more than ever to me that as i always felt that they lump us all together with these symptoms they call ms. i'm sure a lot of us are the same but there are too many differences in the outcomes of treatment. so that has to count for something.

so, bottom line, the doctors have got to start thinking out of the box a "real challenge." but, as individuals it seems a lot is put on us to try to figure this out. what if cheerleader had never went to dr. dake for instance? ccsvi may not be the answer for all of us but it sure has broadened the horizon on the old way of thinking. one shoe for sure does not fit all. but the blood flow sure has to flow whatever is messing with it.

If the drugs helped, that would be one thing, but I am not convinced the CRAB drugs are much more than placebo. And I can get placebo in my bright orange cod liver oil pills.

With my post, I am thinking that we want to look at pure CCSVI, not just CCSVI in MS, to understand CCSVI itself better. If we took healthy subjects only and could accurately identify a percentage of them with CCSVI (somewhere between 0% and 25%, but I have Dr. Cumming's agreement that CCSVI will be found in some percentage of healthy controls, just as varicose vein varicosities are found in some percentage of healthy patients not experiencing symptoms from them)...then look at the brains of those healthy controls, perhaps a statistically significant amount of them will be showing effects from the CCSVI. This could be periventricular lesions, slowed cerebral perfusion, changes in the optic nerve as seen in optical coherence tomography, NAWM or "normal-appearing white matter" that is not actually normal, etc.

I don't know what this would cost or what it would show, but I like the idea. It would add some clarity as to just what the sequellae of CCSVI are even in the absence of MS or in people who don't have hyperactive immune systems complicating the picture.

a brilliant idea

I second it .




Mr. Success

I think there is currently no universally-accepted definition of MS.

Here for example there is an article from Lassman that critics the current "clinical definition" of MS and proposes a pathological definition instead

http://brain.oxfordjournals.org/content/133/2/317.full

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

The problem is that the autoimmune threory has been maintained for 60 years, since the advent of EAE-- and this was a wrong turn. Neurology, (like a spouse who has gotten lost due to one wrong turn an hour prior), refuses to turn the car around and admit making an error. They're just too far down the road.

But the immune reaction of MS occurs in other cerebrovascular diseases.


link

The same immune reaction occurs in stroke, cerebrovascular disease and other vascular "events". MBP and IgG are found in CSF of those with stroke, Alzheimers. A vascular condition, like CADISIL or CCSVI, is an ongoing onslaught, and would explain the continuing demyelination. It is not an immune system gone awry, it is an immune system dealing with an ongoing disease process.

cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

throw the search terms malnutrition and inflammation into google too. don't even have to use google scholar, it's pretty much all journal research (after wikipedia, of course!)

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

At some point, either the sun comes up or the sun goes down. Usually, you can tell which way you are headed when you see one or the other. The other possibility is that you have passed your destination.

"Perhaps it is you who have moved away... by standing still." -Inherit The Wind, Jerome Lawrence and Robert Edwin Lee

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

hopefully it's not too cloudy, 1eye :S hehe

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com