Encephalitis missed by GP and By Eye casualty visit

[Anjidav]

hello to all in this society. I know very little about encephalitis but my Dad has just passed away from this in hospital. He was elderly and had heart failure which was well managed. We didn’t know he had encephalitis until he had 4 seizures and ended up in hospital bedridden on Christmas Eve.What I am wondering is how often drowsiness and confusion plus unexplained eye palsy are missed by the medical profession. I don’t mean for blame but if awareness was raised that these 3 symptoms should be followed with a check for brain activity by MRI to rule out encephalitis perhaps.My fathers symptoms were obscured by a leg infection and a course of antibiotics for that. But he developed right eye palsy with a clear CT scan and I can’t help thinking if they had checked then for encephalitis he might be here today. Perhaps this is too simplistic and we can’t go back of course.

[GreenBamboo]

Hi Anjidav, I am so sorry for your loss.

Encephalitis is complex and it appears to be difficult to diagnose because of the guises of how it presents itself.

My first symptoms were neck ache, feeling fluey, that made way for drowsiness and confusion and so similar to your dad but I didn't have eye palsy.

I was in hospital for 7 days and I was not given a diagnosis until after I had left hospital. I have read a lot about the illness since and there are different types, there are cases where people are diagnosed with mental illnesses rather than Encephalitis, showing that it can be misdiagnosed. Each case is very different as far as the reading I have done.

I am sure I will not have been much help but I didn't want to pass your post without reaching out.

I hope, in time, your sadness makes way for treasured memories.

Take care 🤗

[Anjidav in reply to GreenBamboo]

hello - thank you - your reply helps a lot because you made it and because it confirms it’s a hard one for medical people to diagnose. X

[listener24]

sending you my sincere condolences, by posting your heartbreaking story, it WILL make a difference by simply raising awareness of Encephalitis , as a high percentage of people have very little knowledge or in fact never realised it’s existence until informed . I count myself very fortunate after reading your words.

Sending you kind regards

[Anjidav in reply to listener24]

thank you and best wishes to you - I think that’s all I can ask for. X

[HSE_Survivor]

I’m so sorry for your loss, Anjidav. I lost my lovely Dad in 2021 from a different critical illness, so I know how hard this must be for you .

Recovery from encephalitis varies, depending on the level of inflammation of the brain caused by the virus. Some survivors in mild cases go on to make a good recovery. The lovely group of survivors on here have all recovered well enough to be able to communicate with each other, and to explain how the illness has affected us in different ways .

But a potential complication of severe encephalitis is permanent brain damage. 10% of patients in severe cases do not survive at all, especially if they already had underlying health conditions. Sadly this may have been why your Dad did not recover .

Losing your Dad will never be easy. But if you can, try and focus on the happy times that your lovely Dad was able to have with your family, right until the final days of his life . X

[beachy1980]

I am so sorry for your loss! I feel that the symptoms of Encephalitis are so varied that it seems really difficult. I think it is amazing that you want to raise awareness though and I'm sure the Encephalitis Society will be able to help you further- They are truly fantastic and have helped me so much..... Take care x

[AliBBeerDrinkerSing]

I am very sorry for your loss. I was fortunate to be diagnosed relatively quickly, although my recovery took a long time.

Your post resonates with me, as my own Dad is currently in hospital and is very confused. They initially said that this was delirium caused by a UTI (something we have previously seen with my Grandad) and he was given antibiotics to clear this. Now I know that this can take some time to resolve, but he seems to be getting worse rather than better (and also currently has Covid).

He had a lumbar puncture two weeks ago, but we’ve not had the results back from this. He was also supposed to have an MRI, but they forgot to check that he didn’t have any implants prior to taking him down, so that was rescheduled and we are not sure that’s been done yet.

They mentioned putting him on anti-psychotics to help ease the confusion, but again nobody seems clear if that’s happening.

The above tests seem so similar to my own journey- and he is also hallucinating and moving his arms and legs to move things that’s aren’t there, which are reminiscent of seizures.

He also had a brain tumour about twenty years ago (fortunately caught very early, as he had a walking fit in the middle of the night). I guess it could be related to that.

If it did turn out to be E - a, what a mystery and b, how do I convince my conspiracy-theorist mother that it wasn’t caused by the flu vaccine? We both had this prior to the confusion starting.. but I checked and my consultant said it wouldn’t be related.

[Anjidav in reply to AliBBeerDrinkerSing]

hello AliB, I do hope you can get some tests done and some more information for your Dad. I would mention encephalitis to them if you haven’t already just to cover the options. I hope they’ve done the MRI by now as well.

One issue we had was the very poor communication inspite of my asking and asking for this. Dad was in for all 6 of the Christmas bank holidays which didn’t help at all. The first time a doctor came and spoke with me I had broken down in tears on the ward with worry. My Mum was also in another ward for delirium caused by bowel obstruction. She is well now but also now in a care home we found which seems lovely. As my father took his downturn in hospital I spent 4 to 5 hours with Mum to help her go to the care home and make her bed with home bedding and put photos around.

I do hope your dad starts to respond and the doctors start to tell you more.

Xx

[AliBBeerDrinkerSing]

Thank you. I don't think that they will do the MRI now unfortunately, but the doctor did have a chat with my Mum on Monday.

[AliBBeerDrinkerSing]

hello, so as an update, they did eventually do an MRI, but it didn’t show anything.

Encephalitis was actually mentioned when we went for a meeting with the doctor, but it was more like in passing than discussing it as a possibility.

They think that it’s Lewy Body Dementia, which is very sad. He has deteriorated so quickly- a few months ago he was capable of doing everything.