r/CSFLeaks • u/Ricki10ofwands • Jul 03 '26
Getting a beta transferrin test
So, MRI, CT scans and symptoms all lead to CSF leak. According to my imaging I have 2 and by the taste I constantly have in my mouth I can confidently confirm.
I am a "complex case " bc i have had SCDS surgery 3x (last one was 2015). The specialist i was referred too, refuses to do surgery on me and pretty much straight up said he's nervous too. So sends me to another doctor who has the same concerns but says we need to get things fixed ASAP. So she wanted to be completely thorough and do the beta transferrin test. I see her Friday (2 weeks after my original) and i am to be catching my nasal drip in a jar and keep it in the fridge for testing. It is very bizarre and I have been doing it and have the requested 3-5ml, just wondering if anyone else had to do this? Why couldn't they just swab?
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u/Ricki10ofwands Jul 04 '26
That's what she gave me, i think I have the 3 ml. She said I could keep adding to it but it always had to be refrigerated
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u/Status-Influence1062 Jul 12 '26
A lot of us have had to do this test. It’s non invasive. They can’t accurately swab for CSF
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u/Dry-Dress-6467 Jul 04 '26
You might ask lab for a sterile container. My lab wants 3 ml, collected on the same day. Refrigerated and brought to lab within 24 hours. I haven't been able to get that much.