What about the other 10% ???

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

Postby dlb » Sun Dec 06, 2009 11:12 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???
User avatar
dlb
Family Elder
 
Posts: 201
Joined: Sun Nov 22, 2009 4:00 pm
Location: Didsbury, Alberta Canada

Advertisement

Postby ozarkcanoer » Sun Dec 06, 2009 11:19 am

:D 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".
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby ozarkcanoer » Sun Dec 06, 2009 11:23 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
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby ErikaSlovakia » Sun Dec 06, 2009 11:51 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
Last edited by ErikaSlovakia on Sun Dec 06, 2009 12:41 pm, edited 1 time in total.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
Family Elder
 
Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby dlb » Sun Dec 06, 2009 12:29 pm

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.
User avatar
dlb
Family Elder
 
Posts: 201
Joined: Sun Nov 22, 2009 4:00 pm
Location: Didsbury, Alberta Canada

Postby ErikaSlovakia » Sun Dec 06, 2009 12:46 pm

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 8O
So I had to do it.
Maybe you meant something different. I am sorry I do not know...
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
Family Elder
 
Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby jenf » Sat Dec 18, 2010 9:29 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!!
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
jenf
Family Elder
 
Posts: 106
Joined: Thu Sep 17, 2009 3:00 pm
Location: Albany, NY

Postby Cece » Sat Dec 18, 2010 1:19 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.
Cece
Family Elder
 
Posts: 9024
Joined: Mon Jan 04, 2010 4:00 pm

Postby David1949 » Sat Dec 18, 2010 1:21 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.
David1949
Family Elder
 
Posts: 645
Joined: Mon Aug 23, 2010 3:00 pm

Postby scorpion » Sat Dec 18, 2010 1:55 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.
8O
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby malden » Sat Dec 18, 2010 2:06 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.
malden
 

Postby mag00 » Sat Dec 18, 2010 4:06 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.

8O

Obviously, I have modified my sleeping habits.


my 2 cents
User avatar
mag00
Getting to Know You...
 
Posts: 22
Joined: Thu Feb 18, 2010 4:00 pm
Location: Ontario Canada

Postby malden » Sat Dec 18, 2010 4:36 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.

8O

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 ;)
malden
 

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service