What to expect from Neuropsychometry tests?

[WolfMoon123]

Hello, my 40-year-old husband was diagnosed with Anti-NMDAR Encephalitis back in February (all his tests came back clear, so this is a clinical judgement diagnosis). After a two week stint in hospital he was released with a course of steroids and anti-psychotic medication. We are so grateful he was able to leave hospital walking and talking.

Initially his recovery was going great and he was full of beans and energy with his brain firing like he used to - that waned as his steroid dose reduced. But 4 months on, and now he's finished all his medication courses, his brain just isn't able to function like it used to - he struggles with cognitive ability, executive function and some memory loss.

This could be a time thing, we appreciate we are still early in this recovery but it's been suggested he might need to go back on the steroids for a little while longer (not something he's keen to do as the withdrawal from the initial steroid treatment was really tough).

In the meantime his neurologist has referred him for Neuropsychometric tests at Kings College London, but we're not sure what to expect? Will this 2 hour appointment be the answer to his problems? Or is that too optimistic? My husband is concerned that having never had any of these tests before the AE, they won't be able to know what things used to be like. Is he right on this?

Would love to know of other experiences from people who have been through the Neuropsychometry route after AE. His appointment isn't until August - so quite a wait, and we're just looking for insights to help us manage expectations.

Thank you in advance!

[EncephInternational Partner]

Hi there, I am so sorry to hear about your recent experience. Hopefully the community here on Healthunlocked can offer some support and comfort during your wait until August. If you wish to receive any support from us, our [e-mail] email address may be a good place to start encephalitis.info

[kitnkaboodle]

I did neuropsychology testing about four months after hospital. Over four hours. Failed everything. “Absolute or relative deficits in every area.” Don’t get hung up on the tests, how difficult they will be, how tired he will get (I nearly slept through some of them), the interpretations. This is useful insofar as establishing an “acutely ill baseline,” but just know it will take months and years for the lingering effects to become obvious. Things are up and down a lot in the first year. Hope this helps.

[WolfMoon123 in reply to kitnkaboodle]

Thank you kitnkaboodle this is all helpful to hear. Really appreciate your insight.

[Cf1947]

Your husband's case sounds very similar to my husband's. Four months seems a bit soon to be off the steroids, they are supposed to be tapered very slowly. I don't want to panic you, but my husband came off his steroids after a few months and he had a relapse. The next time round he tapered his steroids much more slowly and the outcome was much better. Now he is all but cured, albeit with lingering epilepsy, but even that seems to be tailing off. I know steroids are a pain to have to take, but it might be worth considering him going back on them again and tapering more slowly this time, for the sake of the longer term. (Caveat - I am not a doctor, just relaying our experience).

[RachmaninovFan]

Thank you for sharing your experiences. My husband has recently been referred for these tests (following limbic encephalitis brought on bu Hashimotos Encephalopathy earlier this year) and we are also wondering what to expect. His memory struggles are pronounced and the mental fatigue needs frequent naps/rest periods, so I have no idea how he will cope, should his referral be successful. We have no idea what these tests might be like. It is oddly reassuring to hear that others have slept through the tests.It's been heartbreaking and extraordinarily comforting to read your experiences and those of the people that replied. For the first time, I feel like we are not the only people going through this weird uncharted territory.

[Paula-38]

Hi WolfMoon123,

I had encephalitis the day after my first birthday, nobody ever mentioned neuropsycholocal testing like Kitnkaboodle had. Nobody knew what was wrong with me until 6 years ago, when I first contacted Encephalitis International, from then on, they informed me everything I needed to know when I was little, they also mentioned I were to be referred for neuropsychology testing which I did do in 2021 for the first time, a heck of a long time after I'd had encephalitis.

My processing speed was last and so was mood, they were the 2 I scored lowest on, but other things I scored either average, just below average, or just above average.

My 2 hours were split into 2 separate 1 hour appointments, I wouldn't have minded if they did 2 hours at once, but that's how it works with The Walton Centre.

For me this was to get a diagnosis of brain injury which I never had before.

My executive functioning used to be a lot worse than it is now.

Delayed memory linked to my processing speed e.g recognising faces I haven't seen for a long time, but if theyve changed their appearance I wouldn't recognise their faces however I would recognise their voices if I listen very carefully to them and pay attention to their voices then I recognise them.I would be expected to perform around the lower end of the average range for my reading ability My immediate memory was then between the average and borderline range with a strength for list learning over story recall, i .e watching TV, and I struggled with delayed recall of a longer story. Visual spatial/constructional ability fell around the average to low average range. I scored within borderline on tests of language.

On a test of working memory (digit span) I scored within the borderline range.

A different test - On language and perceptual reasoning subtests I scored at the lower end of average.

A different test - for processing speed I was slow on this measure , that was the worst score.

A different test on Visual subtests, I scored full marks, but further tests of verbal fluency I scored at the lower end of average range for Letter Fluency and Category Fluency. When I was asked to switch between categories I scored within the borderline range, these scores werr based on the number of responses and I made no mistakes.

That's what it says in the letter I have got as well as other medical terms for different tests, I haven't typed them here incase people get mixed up.

However I think when I'm calmest I can function at my best, but not so much when I'm anxious and/or stressed out.

However I'm still working on the things I was below average and average/borderline for.

So I don't know what these scores would hav3 been like if I had have had them pre-school age they most probably would have been worse, plus the fact I fell off a climbing frame when I was 5, and I had to be hospitalised for a fortnight because I just wouldn't wake up for a long time so I don't know what damage that has done on top of the encephalitis I had. I suppose I should have had these tests when I was 5 but no-one ever mentioned it .

My executive functioning is better when I'm a lot calmer, I can then multitasking better than I could as a kid. I think I ve improved a little bit because I could once only talk to one person at a time, 8 can now talk to up to 3 people as long as the subject hasn't been changed I'm ok, but I'm rubbish if the subject has changed but any small improvement is better than none at all, and if they are not talking too fast. I will never be able to talk fast without having a panic attack but I can improve my fluency to the average range. If I keep practicing reading that might improve too, but I don't know yet. Anything and everything I try to improve on, if its

below average and try to find ways to do this myself.

[Paula-38]

Oops, I made some typos there. I meant I can now talk to up to 3 people .I don't know how the number 8 got there.