Hello following my rather unsatisfactory appt with neuro last week I went for the blood tests he ordered today. I didn’t know what he was actually looking for but the blood nurse told me today they are looking for 3 things: VGKC Anti-VGKC antibody-associated limbic encephalitis/Morvan syndrome], high calcium in blood and high sodium in blood. Never heard of tests for these but she said the results could take a long while to come back, especially for VGKC as it is a complex and unusual test. Just wondered if these tests were common for people with neuro/MS symptoms. I’ve seen here that people’s blood tests usually come back clear so not too worried, just wondered if anyone else had the tests and what other people’s blood tests were for? Thanks x
Hi Bunny (hope you didn’t mind me shortening your name - is just Bunny alright?)
I don’t know what VGKC is, so I can’t help with that specific one. But my neuro did tell me at the time that my blood was tested for over 100 things, of which I probably know the names of only about-half-a dozen. Some of them were quite rare and obscure. Some of them not so rare, but still not nice - definitely tested for HIV & syphilis!
Mine was on BUPA, so I don’t know if they do slightly more comprehensive testing than would be standard on the NHS. But as MS is a diagnosis of exclusion, I assume it would be normal to run quite a comprehensive battery of tests - some of them for quite weird and unusual stuff. I don’t think it means they realistically suspect you of having that thing, but they have to rule it out. After all, rare things still happen - if they didn’t bother to test, they’d miss the one person in a million who has the much rarer thing than MS, wouldn’t they?
I wouldn’t worry about it, unless the results come back abnormal. I’m sure you are being tested, or have been tested, for lots more than just that one thing. They’ll look for infections, vitamin deficiencies, rheumatology markers, and lots more!
Hi Tina, yeah i figure they are just ruling stuff out just wasn’t sure what the proceedure usually is. I;m with BUPA too so things getting done pretty quickly. Just going to put it all out of my mind as much as possible now, I know being anxious about what ever it may be doesn’t help and t could be a long time before I get a diagnosis of an sort, so hey ho, life goes on Thanks, Bunny xx
It sounds like you are just at the stage where they are ruling out or trying to zoom in on one of the very wide range of Neurological disesases. VGKC is a common test but, as far as I can recall, can still only be done at the John Radcliffe in Oxford. It’s complex and they are the world leaders in these antibodies, which are relatively new in medical terms i.e. last ten to twenty years. They are commonly associated with Morvans, Limbic Encephalitis and Neuromyotonia, amongst others.
Thats interesting thanks. That’ll be why they anticipated the tests would take a few weeks then. x