Hi, I am grateful to find this group . I had encephalitis in 2018 thought to be autoimmune. Treated in Intensive care. Had steroid & anti seizure medication for a year. My worry is my health has deteriorated and I worry that some symptoms are returning . Any advice or did anyone else feel this way.
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FinleyEvie11
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Hi!
So sorry to hear you have been so unwell.
I was diagnosed with Autoimmune Encephalitis in August 2017 and unfortunately relapsed in March 2020.
I recognised the signs and symptoms early on, got in contact with my GP and consultant and had an urgent lumbar puncture, blood test and MRI. Within days we knew I was relapsing. I spent a few days in hospital recieving treatment and made a full recovery again.
So my best advice for you is if you have any concerns at all contact your GP, Consultant and if you cannot contact them try your Emergency Department!
I'm sure its nothing to be worried about but best to check these things out for peace of mind!
If it is anything, at least you caught it early!
Take Care
Hi FinleyEvie11,
The only thing I can empathize with is that I have always been taking anti-epilepsy medication ever since I contracted HSV encephalitis and Status Epilepticus together after my first Birthday when I was rushed into hospital in an isolation ward I think it was intensive care. I was in there for six weeks and in those days OVER 40 YEARS ago there were no anti-viral drugs out like there are today ' they came out 28 years ago I believe ' , so I was treated with antibiotics and three epilepsy medications. I would have been about 3 when I was in your position, so the earlier days are always the worst I think. It took me until I was 10 before I started making steady progress and I was always patient with myself . But I did also suffer from severe paranoia when I was little. Sorry I can't empathize with everything but you might understand why when you read this. Hope it helps you.
Hi FinleyEvie11,
I'm sorry to hear that you have this terrible illness. I was diagnosed with Autoimmune Encephalitis in October 2018 so I am almost at my 2 year mark. I was in the hospital for 2 months with steroids and other meds for a year. My doctor's advice at my last visit with him was to "watch for things going sideways". Not sure what that really means, but I'm supposed to keep track of anything unusual in case of a potential relapse. The doctor did say that this is likely mono-phasic or "one and done" as he described it, so it is likely that symptoms may not return.
Recently I have been feeling a lot of anxiety and getting overwhelmed and having some tremors. But is this occurring because I'm under a lot of stress? A pandemic and other stresses causes everyone anxiety, is mine more or less than average?
I write a lot of notes about how I'm feeling, any potential symptoms, etc. If I have to contact my doctor again, I'm sure he will want details. I can also look at my notes and see that things are not as bad as before and that I continue to make progress. Oh! another thing I do regularly is some brain training apps on my iPad that show my progress with short term memory, logic, etc. Seeing that I am meeting or exceeding my previous scores helps assure me that I am making progress and not going backwards.
Hope this helps, best wishes to you.
Hi,
I can definitely sympathise with the anxiety of reoccurring illness! I had Anti-NMDAR Encephalitis in Sept 2017 and often find myself worrying about relapsing.
My very early symptoms were cold/flu so whenever I get anything like that I have to remind myself to keep calm. It is hard because you want to trust yourself and how your body feels but you also don’t want to lean in to worrying about it all of the time.
I would say, if you recognise the symptoms, there is no harm at all in speaking with your doctor.
Wishing the best for you and very glad we can all come together and chat x
