We have heard from hundreds of patients with MS that after hearing about Dr. Zamboni and CCSVI they were hopefully and eager to be tested for venous flow abnormalities. But that their hope soon disappeared when they were tested for CCSVI only to be told they did not show any abnormalities and in effect did not have CCSVI.
But as knowledge and information on CCSVI spreads around the world, we are hearing more and more stories of ‘false negatives’ – patients originally told they are do not have CCSVI, only to find out later that the testing was not done properly and they do in fact have CCSVI.
This medical error is an emotional rollercoaster for the patients it affects and one that we hope to be able to beat through education, awareness and advocacy.
A few tips to help you get an accurate testing and diagnosis:
1. Do your research. Find a diagnostic center that has experience testing for CCSVI. If you need assistance speak to those who have been through the process. You can also speak to you Angeles Hospital case manager about reputable testing centers that have experience with CCSVI testing.
2. Have a basic understanding of the criteria yourself. This will help you have a better understanding of what is going on in your body as well as provide you with the ammunition you may need to advocate for yourself. Take a look at our overview on the Correlation between MS and CCSVI for a brief synopsis of the Dr. Zamboni’s diagnosis criteria.
3. Before your test, be sure to speak to both the ordering doctor and the technician performing the test about the criteria they are using to evaluate your veins
4. Find out how many tests the technician has done; experience makes a big difference in this very specialized testing and can be the difference between a positive and a false negative outcome.
5. If your doctor is not familiar with the proper protocols; help educate them by providing the resources and tools such as Dr. Zamboni’s Protocols and the Testing Criteria to help them help you!
http://www.ccsvi.mx/false-negatives-ccsvi-testing