This Is MS Multiple Sclerosis Knowledge & Support Community

Hi,

Im due for testing/treatment in Poland in May,

I am trying to find signs that i have CCSVI before travelling (and spending alot) to Poland.

I jave heard people here discussing purple toes/feet in MS and how the purple went after CCSVI treatment..

I have the purlple toes, only slightly on feet though.

Are purple toes a clear sign of CCSVI?
If not, what else can i test/check before travelling to Poland?

thanks

I would say your best bet in judging whether you have CCSVI or not is if you have MS. No offense, I think for your sake, and for the sake of tidyness of the forum, you should just have one thread to ask all of your questions.

I have CCSVI, procedure is planned for May. My feet are slightly purple, but moreso always cold (even in temperatures of 30+ degrees celcius)

Are you able to at least have a doppler scan in your part of the world before you venture off to Poland?

ok i will stop asking so many questions.

The reason i do is because i was diagnosed with MS 8 years ago but last year i had a Positive LTT-MELISA test showing ongoing active lyme borrelia.

Lyme disease mimicks MS, so i wanted to double check i have MS/CCSVI and not just LYme disease mimicing MS,

saying that i had two negative lyme 'western blot' tests.

so im confused if i have lyme /MS or both

- - theres nowhere near by that offer CCSVI doppler testing.

CanLyme website has fantastic information and resources. Lyme damage to brain are very distinct from MS MRI's. The U of Calgary
published a fantastic paper last year showing the damaged vascular of Lyme patients and the causitive agent crossing over and through
the BBB.

My advice is to have the CCSVI test but you will probably have to wait to get to Poland to be certain of the result. Get treated if you have CCSVI. Also read CPn Help . It is a well organised site so should help you answer your treatment questions. The Wheldon Combined Antibiotic Protocol helps some people with MS and would be effective against Lyme.
All therapies have risks so be sure that you know what they are before you start them.
Kind regards,
MarkW

thanks for the replies.
i tried a one month trial on cpn oral axb.

i didnt notice any change in that one monthm if anything my mobility got a bit worse, so i stopped taken the abx

adamt, I hear you on the risk of travelling for treatment and not knowing if you have this or not...I don't think there is a way to know before you go, unless you can find someone local to do the imaging. It sounds like maybe it's a gamble...and I've always heard to gamble only with money you can afford to lose...although we are also gambling with our health, inaction is a form of action, etc.! For myself the expense of Poland would have been out of reach regardless, I would've had to wait until treatment possibilities were closer.

Adamt, I had a purple toe since last summer for months...which I think must have improved with IBT, as only since 1 month better. Had a doppler in Jan and Feb 2010 confirming CCSVI. Purple toe is not a sure sign, but for me seems could be an indication. Also have icy feet (apart from pins&needles+insensitivity issues in hand/feet and spells of strong fatigue/instability)...

Convinced that the link MS and CCSVI is there, so would not worry. Anyway, if you go and should they not find anything they would reimburse you the money for the intervention bit. So you have nothing to risk really, only to most likely to WIN sthg!

But be assured if you have MS they WILL find sthg !! I was sceptical to start with myself. Went for the specific eco-color doppler even in two different places...with exactly same doppler result! Now go back to Poland in May to get the follow-up steps of MRV and intervention as in Italy the system unfortunately (and sadly..) still blocks me to move on beyond the performed doppler. Great we have Simka who is committed to help and also supports False Creek!