trust my results?
Posted: Sun Jan 24, 2010 9:10 pm
After my last MRI showed five active lesions, my neurologist asked 'would you like to have your veins tested?'. I said 'sure!'. She assured me that the protocol had been given to the techs, but that I would be the second person at that facility to be tested (one of the mayo clinics).
When I got there, the person actually doing the test said she had kind of heard of CCSVI but really didn't know what it was about. She was told where to test by the person who was going to read the test. I tried to explain that she might be looking for some sort of reflux. She said she did ultrasounds all the time on the jugular veins and that there was really only one certain way to do them. We did one test laying down on the right side. Then one sitting up on the right side, then left side. Then I laid back down and she did one more test on the left side. Is that the right way?
I did not meet the person who read the ultrasound and I cannot attest to their knowledge of CCSVI or the protocols other than they were given some sort of instructions on a 'protocol'.
My test was negative. How much faith should I put in that diagnosis? Is it possible that the test was done right, but the person reading the results might have gotten it wrong? Should I get a copy of the test to have someone else look at it? I did ask for an MRV, but was told that it'd be too hard to justify to insurance.
Edit to add: I have RRMS. Currently seventeen lesions, five active.
When I got there, the person actually doing the test said she had kind of heard of CCSVI but really didn't know what it was about. She was told where to test by the person who was going to read the test. I tried to explain that she might be looking for some sort of reflux. She said she did ultrasounds all the time on the jugular veins and that there was really only one certain way to do them. We did one test laying down on the right side. Then one sitting up on the right side, then left side. Then I laid back down and she did one more test on the left side. Is that the right way?
I did not meet the person who read the ultrasound and I cannot attest to their knowledge of CCSVI or the protocols other than they were given some sort of instructions on a 'protocol'.
My test was negative. How much faith should I put in that diagnosis? Is it possible that the test was done right, but the person reading the results might have gotten it wrong? Should I get a copy of the test to have someone else look at it? I did ask for an MRV, but was told that it'd be too hard to justify to insurance.
Edit to add: I have RRMS. Currently seventeen lesions, five active.