I posted this in General, but am saying it here too...

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

I posted this in General, but am saying it here too...

Postby whyRwehere » Mon Jan 18, 2010 7:03 am

My husband was treated for a severely blocked jugular and told his pre-sacral plexus veins were missing. His treating doctor decided to discuss this with the head honcho at a very important hospital for MS in France. He and the 3 other neurologists present, have decided that my husband does not have MS. I guess the 3 neurologists were wrong 8 years ago...or, maybe he has CCSVI, or maybe they don't even know what MS is (well, that is obvious).
We will meet with them ourselves, soon, I hope.
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Postby costumenastional » Mon Jan 18, 2010 7:15 am

what "does not have ms" mean? doesn't your husband have lesions? ms symptoms? i don't get it... i read the post about his treatment and i d say ms is the only name they could give. but since someonre told them about blocked and missing veins they just playing crazy.

i d also like to know who wah the doctor that discovered the ccsvi or at least what tests were involved.

i read your other post and indeed... if not ccsvi he would be given poisons for the rest of his life. Jesus...
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Postby whyRwehere » Mon Jan 18, 2010 7:29 am

My husband has what seems to be a slowly progressive form of MS, or did have, I should say.
8 yrs ago, he had a lesion on his spine with some small lesions in his brain. Perhaps it was the antibiotics protocol he was on, or the Best Bet Diet, or praying, but the latest MRI pre angioplasty, showed nothing on the spine and just a few small lesions in the brain. In other words, his MRI is no longer typical of MS, and apparently lesions do not disappear(?).
Anyhow, 3 neurologists agreed 8 years ago, and my husband did try Avonex and Copaxone, both of which were awful for him, so he went drug free from 2004...except for the antibiotics.
What I believe, is that it is very convenient for them to deny the theory of Zamboni, at least in my husband's case, because the MRI allows them to disagree with the original diagnosis. No matter that the LP showed he was ill an he slowly becomes less able.
They don't know what they are talking about...one minute it is MS the next it isn't, and they don't even know what MS is, really, so how can we believe anything they say?
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Postby costumenastional » Mon Jan 18, 2010 7:37 am

who said anything about believing them? i for one wouldn't go for injections whatsoever. what i did was a large dose of chemo (campath) which of course i am not a poster boy for... i just wanted to earn some time until i figure out what the hell is happening to me. i also have antinuclear antibodies 1:320 and all in all i think that if its not ccsvi it has something to do with a chronic infection in my throat. my lesions were in my cervical spine (2). after campath one dissapeared and the other one was left half in size.
so, why my damn symptoms dont go away?
noone has an answer. i should go for MRIs next month but to be honest i am bored...
i d prefer to check my veins if only i could find th eright doctor to do it.
my spinal tap was indicative of ms also but as you said: what is ms?

what is the doctors's field? was she a vascular surgeon?
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Postby whyRwehere » Mon Jan 18, 2010 7:44 am

She is an interventional radiologist. She's a thinker; we are glad to have met her!!
Sorry the campeth didn't work out...definitely have a doppler done.
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Postby costumenastional » Mon Jan 18, 2010 7:49 am

i cant say i didn't work out since i have had no more relapses since.
but i changed my body's chemistry for ever and this is no joke you know?

radiologists here... well the one i gave all Zambonis papers and stuff told me that she could reccomend the best neuro in Greece that i should see. and guess what? he was the first i ever saw back in 2008 upon diagnosis.
great help i got from there...
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Postby whyRwehere » Mon Jan 18, 2010 7:54 am

Yes, at what price is the cure? And I am not talking money.
You just need to go to your GP and say some reason (ie headaches) to get a referral for the doppler exam, but there you have to be careful to get someone who knows what they are doing! If they see anything, they send you to someone else for the Phlebography and possible treatment, an interventional radiologist for example. When they investigate, they will find a problem if there is one and can fix it... Who needs the neurologist? especially when they change their minds.
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Postby costumenastional » Mon Jan 18, 2010 7:56 am

this is what i plan to do eventually. thank you for your help and i wish my best for your husband.
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Postby whyRwehere » Mon Jan 18, 2010 7:58 am

No problem, and thanks for the well wishes.
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Postby cheerleader » Mon Jan 18, 2010 11:08 am

Why- thank you for reposting. Because of all the new people on this forum, I'm missing the most IMPORTANT information in exchange for banter that does not belong on CCSVI. Please people, refrain from posting a new f-ing thread unless you bring us something EARTH-SHATTERING. OK, rant over.

What this means, in Why's husband's case, is that neurologists may now begin to back-peddle from an MS diagnosis when they are confronted with clear evidence that MS is a venous disease.

Lesions come and go in MS. That is a FACT! Lesions appear during times of immune exacerbation, and the area of damage can remyelinate. This does not always happen, but it does occur in MS. What this proves is that IT IS NOT THE LESIONS causing Why's husband's progression. The lesions are secondary. The disease progression is being caused by a lack of venous return of blood to the heart- CCSVI.

Why's husband PROVES the CCSVI theory.

I would contact Dr. Zamboni and Dr. Salvi with all of your husband's medical records. There is a paper to be written here. I wish you some help for your husband, some stabilization of his disease progression. We're seeing more spinal venous issues in progressive patients with missing veins, and this will be harder to deal with, but not impossible. Please keep posting, why. I think of you often...wife to wife...fighter to fighter.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby whyRwehere » Mon Jan 18, 2010 12:09 pm

Thanks for the support Cheerleader...I have to laugh a bit at this situation. they haven't even met my husband yet. We will meet with at least one of them soon, and in the meantime I am trying to locate his first set of MRI pics.
What could come from this, is that they are more careful who they label as MS...and maybe check people for venous anomalies routinely, like Lyme Disease and Hugh's Syndrome.
I am so tired. Today has been very draining. I'll think about it all tomorrow.
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Postby jay123 » Mon Jan 18, 2010 12:41 pm

Good luck why!

Cheer, I'm totally with you but I wish you would watch your mouth! LOL.

I missed the Dr. Mehta story for a long time as I didn't bother to read that thread about where to go...

I wish our mod's would get a little firmer and start closing some threads our moving them to the correct forum.

I have volunteered to help but haven't been accepted.
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Postby shye » Mon Jan 18, 2010 4:45 pm

(I put this reply in the General also...)

WhyRwehere,
Crazy, I know. My neuro-opthalmologist said it was MS (from MRI ,and optic neuritis, and history--despite fact the current eye tests were pretty good, and not having an incident then)--
The MRI then ordered by this dr (which showed MANY more brain lesions than the previous MRI he was using) was interpreted by radiologist as: impression includes microvascular disease (EUREKA-- CCSVI in the accepted lingo) vs inflammatory/demelinating process(ie, MS).

So Eye Dr felt it would be in my interests to be attached to a major teaching hospital MS clinic with trials, meds, "expertise" etc,. So when examined by them (note, i did forget to bring the med. records documenting optic neuritis, retrobulbar neuritis, and optic atrophy--so they had to take my word, and you know how that goes)--I was in a plus state that day--ie, no obvious slurring or muscle fatigue, eyes pretty good, walking pretty good, so appeared okay. Their interview questions much less comprhensive and not as detailed as those of the neuro opthalmologist.
Upshot: POSSIBLE MS , "lesions more consistent with vaso than MS, but could be consistent with MS"
SO VERY CLEAR IT IS ALL UNCLEAR RE: MS !!!!

AND get this--they never told me about the vaso part!!!(I just found out a year later when requested copy of records because I knew I would never go back there--they were super negative about vitamins, etc, and tried to convince me to stop the B12 shots). just said come back when you get a bit worse, we have many medicines that can help you.

And I will second your call for caution re: meds. If they can't determine a disease better than they do MS, why take "MS medicine"?? Better to get your immune system in shape with diet and supplements, find out what you might be allergic to and eliminate it from your life, ie, get yourself in as good health as you can, and possibly along the way you will start to see what really might be wrong with your body. Food allergies trigger attacks in me, and probably in long run contribute to demyelination--so best to stop the offending foods, and use nutrients to repair the myelin
rather than take meds with ALL sort of bad side effects on your body
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Postby marcstck » Tue Jan 19, 2010 1:07 pm

Just want to point out that there are many vascular conditions that are differential diagnoses to MS. Not all vascular abnormalities would fit the CCSVI model, yet many do cause neurodegeneration, and even MS-like brain/spine lesions.

Among these vascular diseases are various types of vasculitis and arterial fistulas, which have long been documented to cause CNS degeneration.

In my own case, after nearly 7 years with a diagnosis of PPMS, the National Institutes of Health, who have been examining me for the last six months, have decided that I do not have MS, and now suspect that my neurologic issues may be related directly to some vascular abnormalities (I have stenosis in my left upper jugular). They have specifically stated that the Zamboni research does not pertain to me, since my disease does not show many of the hallmarks of MS (signs of inflammation, O-bands in the CFS, etc.), despite the fact that I do have a very large lesion at the cerebrospinal juncture.

Not all vascular abnormalities that impact the CNS are CCSVI. It's very important to keep that in mind as we hear of more and more patients with abnormal vascular systems. The CNS venous systems have simply not been studied much in the past, and there's no real definition of what "normal" looks like. Unlike the arterial systems, there is a wide disparity from patient to patient in the structure of their venous anatomy.

I'm a supporter of the CCSVI hypothesis, but I suspect it's not THE answer for every case of what we currently call multiple sclerosis. A large subset, quite possibly, but trying to shoehorn every case of MS to fit into the CCSVI theory is an erroneous approach, IMO...
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Postby ozarkcanoer » Tue Jan 19, 2010 1:17 pm

Hi Marc,

You could be right. But it won't be long before we get the first 500 results from the Buffalo study. Then we should have a better idea of what CCSVI and MS is (or isn't) all about.

I hope that you find some answers to your problems, MS or not. It is really what we all want, isn't it ?

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