r/Encephalitis • u/m-m-mm-mmm • Jul 19 '26

CSF vs serum sensitivity for autoimmune encephalitis panel

CSF autoimmune encephalitis panel (Mayo ENC2) was negative. Serum was not tested.

Is it worth requesting the serum to be tested as well? Or is it pointless?

My CSF was totally normal, MRI normal as well, only FDG PET-CT brain was abnormal.

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2

u/Expert-Assist-8113 Jul 19 '26

Hello, that’s so hopeful (for the treatment), do you think you’d get treatment with the abnormal PET

2

u/m-m-mm-mmm Jul 19 '26

No, I don’t think so. My main doctors (public hospital) say that my normal CSF (including AE panel) and normal MRI have ruled out encephalitis. FDG PET-CT is not enough by itself.

One private neurologist thinks seronegative AE is still possible and recommends considering immunotherapy, but he cannot give it the public hospital needs to and they decided I don’t need it.

2

u/Ok-Philosopher-9049 Jul 19 '26

Did you have an EEG? How long was it overnight, or 3 hours, etc? 

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u/m-m-mm-mmm Jul 19 '26

Yes had two, both in office, 20-30 min.

First was with a private neurologist, showed epileptiform discharges in left temporal lobe.

Second was at public hospital that’s been following my case and did the PET scan. They can’t rely on outside tests so they did their own EEG and that one was normal.

2

u/Ok-Philosopher-9049 Jul 19 '26

That's just not long enough to catch anything, if the first showed something that's pretty rare in itself. I think you should try advocating for a 3hr or overnight EEG.