Is there anything which would suggest i have CCSVI?

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

Is there anything which would suggest i have CCSVI?

Postby adamt » Thu Mar 18, 2010 5:53 am

Hi,

I am planning to go to Poland for CCSVI testing and possible treatment in May.

I wanted to have a doppler test before i go to Poland - to save me time and money going to Poland if im negative.

Sp does anyone know of anything i could do/ monitor/ take that would suggest i have CCSVI?

Thank you
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Postby Mutley » Thu Mar 18, 2010 9:07 am

Have you been diagnosed with MS? or do you have any symptoms that fit the MS profile?

Don't bother with a Doppler pre-Poland unless it is done by someone trained to look for and recognise CCSVI, and who has plenty of experience.
Last edited by Mutley on Fri Mar 19, 2010 9:56 am, edited 1 time in total.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby adamt » Thu Mar 18, 2010 11:36 am

yes i was diagnosed with RRMS in 2002 folowing an attack, but since then have NEVER had an attack just slowly progessed (mobility got worse)
- - but since starting 2mg ldn in Jan 08 i havent progressed at all.

I do have MS symptoms:
Mobility - poor balance and legs strength - mainly left side
Bladder - urgency, frequency, control
Low libido
Stiffness when first standing for about 5-6 seconds
Weight loss - i dont think this is a ms symptom, its a lyme disease one. - started losing lots of eight 10-11 years ago,

I had a lumber puncture which showed antibodies and an MRI which showed lesions in the brain and lower spine.

I got tested last year for Lyme disease (western blot test) which came back negative, but later requested a specialist Lyme test (LTT-MELISA) which came back positive! - but no treatments have done anything for me - abx, rife machine, etc. so i guess it was a false positive.
- - lyme mimics MS, but i dont have any common lyme symptoms.

i wanted to make sure i had CCSVI before going to poland due to the awkward inconvience and costs. but if the doppler test must be - but performed by a specialist, maybe i should leave it,
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Postby lucky125 » Thu Mar 18, 2010 5:31 pm

Just out of curiosity, any chance your feet are purple?
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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I had that

Postby daytrader » Thu Mar 18, 2010 7:16 pm

1998 left sided hemiparesis. 1999 heart. 1999 got sicker and sicker....iv rocephin helped bigtime so now i had lyme. Back to ms again and just did round 2 of campath (alemtuzumab). Never really had another relapse since 1998 unless the heart, gut, feet, etc all coming along for the ride is/are relapses.

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Postby adamt » Fri Mar 19, 2010 9:34 am

lucky125 wrote:Just out of curiosity, any chance your feet are purple?


no my feet are not purple but they are a bit light red/slightly mauve around the toes/top of foot.
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Postby Billmeik » Fri Mar 19, 2010 9:43 am

poland will find your ccsvi if its there

Your ms sound a bit like mine. I think you'll have a membrane occlusion.

There are some places in na to get dopplered but where are you?.
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Postby lucky125 » Fri Mar 19, 2010 9:44 am

adamt wrote:
lucky125 wrote:Just out of curiosity, any chance your feet are purple?


no my feet are not purple but they are a bit light red/slightly mauve around the toes/top of foot.


My whole foot wasn't purple either. Mostly my toes and outside edge of the foot. My doc rubbed the purplish parts of my feet to make them white, to see how quickly the blood returned.

Blood return is much faster after Liberation. Also, the color is not deep purple anymore. Most of the time it is normal whitish pink now!

He thinks that it might be a good visual indicator of CCSVI. Although he is the first to admit that this is VERY UNSCIENTIFIC!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby adamt » Fri Mar 19, 2010 1:02 pm

Billmeik wrote:poland will find your ccsvi if its there

Your ms sound a bit like mine. I think you'll have a membrane occlusion.

There are some places in na to get dopplered but where are you?.


If i have this 'membrane occlusion' is it a result a result of CCSVI?
Is it be treated by the liberation procedure?

Im in London England, is it better to just go to Poland for the testing?

i know it needs to be a Doppler - hIGH FREQUENCY PROBE (7.5-10mHz)
but i was told it has to be tested by a radiologist, so it will be difficult ad expensive to get the test done here in London England.
so maybe i should just go to Poland for the testing and treatment if positive.

thanks
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Postby Billmeik » Fri Mar 19, 2010 8:24 pm

the membrane stuff is a simka specialty. Is it ccsvi? dunno.
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Doppler at Georgetown University Hospital

Postby Rosegirl » Sat Mar 20, 2010 6:08 am

My doctor also looked for purplish feet and how fast the blood returned when he pressed on a spot.

He also had me lie down with my chin slightly raised and then turn my head to the side. He noted (and photographed) that the veins on the left side of my head bulge more. My left side is where most of my problems are.

I'm scheduled for a doppler on April 7 at Georgetown in Washington DC. We also talked about an MRV, but he thinks that's probably a waste of time. If the doppler finds anything suspicious, we'll go right to the venogram and do an angioplasty if necessary.
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Postby adamt » Wed Mar 24, 2010 11:21 am

thanks for the replies,
is there anything else i can check besides the purple feet that would suggest i have CCSVI?

I cant really afford to fly to Poland and pay for testing, to find im negative!
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testing in London

Postby Rosegirl » Wed Mar 24, 2010 12:18 pm

Adam - Have you checked out this site? They're supposed to be opening clinics in London and Glasgow.

http://www.ccsvi.co.uk/getting_tested.php
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Re: testing in London

Postby adamt » Wed Mar 24, 2010 12:32 pm

Rosegirl wrote:Adam - Have you checked out this site? They're supposed to be opening clinics in London and Glasgow.

http://www.ccsvi.co.uk/getting_tested.php


yeah i have read about this clinic, but to pay £300-£500 is quite a lot.
And i am booked in Poland for May, so it would probably be better to just fly to Poland.

I was hoping for any ideas on if there is anything to look for or test to suggest CCSVI, from home.
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Postby Daisy3 » Thu Mar 25, 2010 7:21 am

Adamt,

are you just going to have the tests done to see if you have ccsvi?

Thats what i am interested in doing at the moment,have they agreed to do that for you in Poland? I was wondering if there was any pressure in having the whole lot: tests and procedures if need be out there..

You can PM if you like if there are any details taht you would not mind sharing.
I am also in the UK
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