I got a response from UT Southwestern

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

Postby Johnnymac » Thu Dec 10, 2009 10:37 pm

I've had two more points of contact with UTSW today. One of the key researchers in the MS Clinic actually returned my call and left her number (left my stupid cell at home today and missed the call)..I'll be calling her tomorrow.

Also got an email reply from Dr Elliot Frohman. I basically just asked for his support in the research into CCSVI. His reply was very encouraging to me in that he was not dismissive.

His reply:

All new ideas about an enigmatic disease such as MS should be taken seriously...the path however must be focused on replicating this data, and organizing controlled and rigorous trials that both protect patients and either prove or refute the principles of the hypothesis. As you can imagine, I have received hundreds of similar emails...a number of studies are being planned.
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Postby prof8 » Thu Dec 10, 2009 10:51 pm

Great news! Thanks for your persistence!!!!
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Postby shye » Fri Dec 11, 2009 9:57 am

Wow--checking for venous occlusion--sounds so obvious, why didn't we think of it?
Am sure my doctor will give me a script for this--
And as I recall, (can't this minute find MRI report), there were two options to consider in MRI report re: head lesions.

one was MS, other was cardiovascular--I remember my doc then ran the usual heart blood tests, and all were fine, so with this info and my history, MS clinic (MT Sinai, NYC) ruled MS was the disease. And no further testing re veins occluded etc

Rather then now contact the clinic (which I will eventually do--they are supposed have the top drs in the area, and have just expanded greatly, with all sorts of grants--MS is now considered worth giving grant money to, so watch out, the new meds are going to be glutting the scene), I will first get my dr to send me to that same hospital for the venous test, then if results indicate occlusion, will also contact the MS Department.
Again, thanks for this way around the system!!!
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Postby shye » Fri Dec 11, 2009 10:04 am

One problem I forsee with this test--does anyone recall if they use dye or contrast of some sort for test? I have severe problem with these--almost died for Iodine dye, and read that Gandolinium (SP?) is very dangerous, esp for MS patients--very hard to get out of system. I had it once, but was during period was severly ill, so not sure if the med problems were made worse by it or not.
Thanks for any info on this...
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venous occlusion

Postby judipom » Fri Dec 11, 2009 11:12 am

The appointment I set up to see my GP about getting tested for VO was cancelled cause she's sick. I'll try next week and let cha know, how it goes. Judi
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
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