tested in ireland

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

tested in ireland

Postby seabee22 » Mon Mar 08, 2010 7:18 am

Had a scan done. Have Ms since 91. Duplex which I have heard it is similiar to Dopplar. I was told it looks normal. where do I go from here. anyone please advise thanks :?
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Postby Cece » Mon Mar 08, 2010 8:07 am

Wait for more to be known about CCSVI; travel to somewhere that is more experienced with testing and procedure; pursue an MRV or venogram or second opinion Duplex there in Ireland. Welcome and best wishes.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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negative results

Postby GiCi » Mon Mar 08, 2010 9:36 am

I cannot tell where and by whom but I had a doppler test after the venogram confirmed stenosis in both jugular veins: it was normal!!
Unfortunately only experienced operators can read the test properly and they are not many.
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Postby Merlyn » Mon Mar 08, 2010 1:03 pm

One out of every six Irish carry the genetic mutation for hemochromatosis. Run a proper iron metabolism panel, including ferritin, TIBC, total iron, and transferrin. That's where you should go from there.
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Postby Bethr » Mon Mar 08, 2010 1:36 pm

Totally agree with Merlyn. Get your iron panels done, including the important "transferrin saturation", and get gene tested for hemochromatosis. May lead to nothing, but it should be checked.

I've just met another MS sufferer who has HH. He has been through a course of phlebotomy now and is symptom free. His MS set in when he failed to keep his ferritin in check.
If you have Irish/Celtic blood lines you would be mad not to try this approach.
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Postby Wonderfulworld » Mon Mar 08, 2010 2:53 pm

Hi Seabee
I'm also in Ireland, also interested in being scanned but I'm thinking that due to lack of knowledge about CCSVI I might have to wait awhile, or travel.
PLEASE let me know if you hear of anywhere in Ireland doing proper CCSVI scanning, I would be very interested.

Personally I don't think haemochromatosis is necessarily a 'runner' although it wouldn't do any harm to get it checked out. My iron is normal, but still have MS. :? . Tbh there are lots of genetic high-risk factors in Ireland (CF is one, Coeliac another) but it doesn't necessarily mean it's something you personally have. That said, turns out I was a Coeliac as well as MS'er. :roll:

Hope you get some answers about your scan.
Good luck.
Concussus Resurgo
RR-MS dx 1998 and Coeliac dx 2003
Tecfidera, Cymbalta, Baclofen.
EPO, Fish Oils, Vitamin D3 2000 IU, Magnesium, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle, Melatonin.
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