What about the other 10% ???

dlb · Post by **dlb** » Sun Dec 06, 2009 10:12 am

If my memory serves me, I skimmed thru' Erika's posts of her treatment in Poland & I think she said that there were some tests that came up negative but that at some point they discovered that she had a "valve" in one of the jugulars - I'm relatively new to the site & not sure how I'd quickly find that info again, but I think it was Erika's - my apologies if this isn't correct. Maybe in that 10%.... a more tenacious testing regime needs to be sought so that different abnormalities might be discovered???

ozarkcanoer · Post by **ozarkcanoer** » Sun Dec 06, 2009 10:19 am

Great idea, dlb, I'll add "possible false negative" to the list, and I will add your statement "a more tenacious testing regime needs to be sought so that different abnormalities might be discovered".

ozarkcanoer · Post by **ozarkcanoer** » Sun Dec 06, 2009 10:23 am

The newest list of possibilities :

1. misdiagnosis - i.e. the patient doesn't really have MS
2. dynamic occlusions
3. gluten ataxia (this is really an example of #1)
4. stenosis other than agenesis or stenosis of jugular and azygous
5. a false negative - a more tenacious testing regime needs to be sought so that different abnormalities might be discovered; or a different imaging technique should be pursued

ErikaSlovakia · Post by **ErikaSlovakia** » Sun Dec 06, 2009 10:51 am

dlb wrote:If my memory serves me, I skimmed thru' Erika's posts of her treatment in Poland & I think she said that there were some tests that came up negative but that at some point they discovered that she had a "valve" in one of the jugulars - I'm relatively new to the site & not sure how I'd quickly find that info again, but I think it was Erika's - my apologies if this isn't correct. Maybe in that 10%.... a more tenacious testing regime needs to be sought so that different abnormalities might be discovered???

Hi dlb!
I do not know what you mean.
I had all negative tests in Slovakia but no test was negative in Poland.
I had 4 negative Dopplers in Slovakia, I had 2 negative CTs with contrast - angiography in Slovakia I had one negative MRV with contrast in Slovakia.
Maybe you mean this?
Erika

dlb · Post by **dlb** » Sun Dec 06, 2009 11:29 am

Thanks Erika for the explanation. I guess I need an anatomy lesson about the valves we have in the jugulars - didn't realize we had them & that they could be faulty in some way. I think I must have read about the negative results you got in Slovakia but I guess the point is - there were some false negatives at first but the testing in Poland proved otherwise. Point being... if we have MS and then get test results saying there is no stenosis, then maybe we need to look for another opinion. Hopefully so much will be understood with the studies currently underway & to come! Also, as patients, we need to be aware of these scenarios.

ErikaSlovakia · Post by **ErikaSlovakia** » Sun Dec 06, 2009 11:46 am

dlb wrote:Thanks Erika for the explanation. I guess I need an anatomy lesson about the valves we have in the jugulars - didn't realize we had them & that they could be faulty in some way. I think I must have read about the negative results you got in Slovakia but I guess the point is - there were some false negatives at first but the testing in Poland proved otherwise. Point being... if we have MS and then get test results saying there is no stenosis, then maybe we need to look for another opinion. Hopefully so much will be understood with the studies currently underway & to come! Also, as patients, we need to be aware of these scenarios.

Well, my first step was to have Doppler in Poland. I knew all the tests in Slovakia would be negative. I was trying to make my health insurance company to pay for it. We he EU law here - E112 - if there is not possible to make the diagnosis neither treatment, health insurance company must pay for the treatment abroad but it is just paper...
Everybody in Slovakia was just

So I had to do it.
Maybe you meant something different. I am sorry I do not know...
Erika

jenf · Post by **jenf** » Sat Dec 18, 2010 8:29 am

I can attest to the misdiagnosed aspect of the study. I participated in the Buffalo trial last year and then subsequently had the venogram done last March. When no stenosis was found, I began to question the diagnosis. I signed up for the clinical trail at NIH (Wheelchair Kamikaze had been through the same one), and at the completion they said unequivocally, "you have MS". I stared on CRAB's, even though I still wasn't convinced.

My older sister started having neurological problems and was diagnosed with Lyme in her brain. After finding that out, I went to her Infectious Disease doc who started me on Doxy (this was after 7 negative Lyme tests). I responded to the Doxy, so I went to an Integrative Medicine doc in NYC who did yet another Lyme test through Igenex. Low and behold, it was POSITIVE! Finally, an answer.

So even by all medical standards, I have MS, but it's really Chronic Lyme. So it's not that people are being misdiagnosed, it's that the medical industry is diagnosing those with Chronic Lyme with MS. It's like the chicken and the egg issue. Except we know who the chicken are this time!!

Cece · Post by **Cece** » Sat Dec 18, 2010 12:19 pm

ozarkcanoer wrote:The newest list of possibilities :

1. misdiagnosis - i.e. the patient doesn't really have MS
2. dynamic occlusions
3. gluten ataxia (this is really an example of #1)
4. stenosis other than agenesis or stenosis of jugular and azygous
5. a false negative - a more tenacious testing regime needs to be sought so that different abnormalities might be discovered; or a different imaging technique should be pursued

I'd put doctor inexperience in with the #5. Always good to double-check a CCSVI-negative diagnosis with one of the very few more-experienced providers out there.

David1949 · Post by **David1949** » Sat Dec 18, 2010 12:21 pm

There are at least 4 different types of MS; RRMS, SPMS, PPMS and Benign. Are they really all the same disease or are they different diseases that are all thrown into one pidgeon hole called MS? Maybe MS is really several disease, some of which are related to CCSVI and some which are not.

I also agree that misdiagnosis is a possibility.

Lastly I would say that CCSVI is a science in its infancy. Maybe smaller veins inside the brain can also be stenosed. But it might be difficult or imposible to find those with ultrasound. I'm hopeful that the Haacke/Hubbard fMRI might be able to locate such stenoses if they exist.
And it also may be that some CCSVI is present sometimes but not other times. Maybe we would call it Relapsing Remitting CerebroSpinal Venous Insufficiency.

scorpion · Post by **scorpion** » Sat Dec 18, 2010 12:55 pm

David1949 wrote:There are at least 4 different types of MS; RRMS, SPMS, PPMS and Benign. Are they really all the same disease or are they different diseases that are all thrown into one pidgeon hole called MS? Maybe MS is really several disease, some of which are related to CCSVI and some which are not.

I also agree that misdiagnosis is a possibility.

Lastly I would say that CCSVI is a science in its infancy. Maybe smaller veins inside the brain can also be stenosed. But it might be difficult or imposible to find those with ultrasound. I'm hopeful that the Haacke/Hubbard fMRI might be able to locate such stenoses if they exist.
And it also may be that some CCSVI is present sometimes but not other times. Maybe we would call it Relapsing Remitting CerebroSpinal Venous Insufficiency.

malden · Post by **malden** » Sat Dec 18, 2010 1:06 pm

Cece wrote:
ozarkcanoer wrote:The newest list of possibilities :

1. misdiagnosis - i.e. the patient doesn't really have MS
2. dynamic occlusions
3. gluten ataxia (this is really an example of #1)
4. stenosis other than agenesis or stenosis of jugular and azygous
5. a false negative - a more tenacious testing regime needs to be sought so that different abnormalities might be discovered; or a different imaging technique should be pursued
I'd put doctor inexperience in with the #5. Always good to double-check a CCSVI-negative diagnosis with one of the very few more-experienced providers out there.

I will add:

6. not trained by dr. Zamboni himself.

mag00 · Post by **mag00** » Sat Dec 18, 2010 3:06 pm

Regarding "dynamic occlusions"

I underwent the procedure and was found to have 100% blockage
in my IJV when my head was turned to the side. Full flow in all other
positions. As far back as I can recall, I've always slept in that position.

Obviously, I have modified my sleeping habits.

my 2 cents

malden · Post by **malden** » Sat Dec 18, 2010 3:36 pm

mag00 wrote:Regarding "dynamic occlusions"

I underwent the procedure and was found to have 100% blockage
in my IJV when my head was turned to the side. Full flow in all other
positions. As far back as I can recall, I've always slept in that position.

Obviously, I have modified my sleeping habits.

my 2 cents

Good choice, and besides, you saved 10.000$ (perhapse for a new bed, Tempur madrace and a new blanket ;)