In limbo

[Magdalene22]

Hello everyone,

My mum had Herpes Simplex Encephalitis in March. She had a Neurology appointment this morning. We were hoping he was going to arrange testing for autoimmune encephalitis as she has been having severe psychological symptoms. However, he had apparently already discounted that and is instead writing a report for her appointment with Neuropsychology in three weeks time.

Unfortunately this leaves mum and us with her experiencing worsening symptoms. She is extremely distressed, experiencing delusions and is obviously very confused. The Mental Health team who have been dealing with her case had previously prescribed two different anti anxiety medications which seemed to have no obvious effect. We are therefore at a loss as to what we should do next.

Thank you in advance.

[Kazjoh]

Hope she is given a neurologist who listens to your concerns about her mental health after her illness. Go with her to the appointment and ask for support links

[Magdalene22 in reply to Kazjoh]

Thank you for your advice.

[alpappy]

I had auto immmune Your mom sounds similar Have they done a spinal tap? Sounds like she needs retuximab and steroids Its a long journey but she can recover most of her function if not memories All the best Dr Alan Papert NZ

[Magdalene22 in reply to alpappy]

Thank you for your reply. The doctor from Neurology decided before seeing my mum that she didn't have autoimmune encephalitis. He based this on the fact she is only experiencing psychological symptoms. He said that with autoimmune encephalitis she would have other effects, such as seizures. I was extremely upset and disappointed as I thought they were going to test for this. Best wishes

[alpappy]

They should even if only to be sure imho and I had a cat scan that found a cancer causing it 4 years ago and I msluce and we'll with some deficits best of luck Alan

[Magdalene22]

I agree, if only to rule it out. They are probably reluctant as they no doubt have to really justify all their tests on funding grounds. I will discuss it with the rest of the family. Although I'm sure it will be extremely difficult to get the doctors to change their minds. Thank you

[Ocean96]

Hi Magdalene22,

I am so sorry to hear you and your family have been going through so much. I'm sorry the consultant didn't fully listen to your concerns. I think it's important to remember, doctors don't always get it right especially with such a rare illness like Encephalitis. It's completely okay to get a second opinion and if this is something you would want to do, maybe speak to your GP for a different referral to a neurologist?

The Encephalitis Society has so much information and supports and I have personally found them really useful in times I was struggling and unsure what to do next. Here is the link to where you can contact the society - encephalitis.info/support

[NebraskaTexas]

Dear Magdalene22, I'm very sorry to hear that you are not being listen to. Being her care giver, you know her best. For my husband to be diagnosed, it took 2 spinal taps and finally a brain biopsy to determine he had Anti NMDA Receptor Encephalitis. The spinal tabs kept coming up negative and he was getting worse so that is why they had to do the brain biopsy. I would encourage you to get a second opinion if possible.

[Magdalene22]

Hello NebraskaTexas, thank you for your reply. We have been told today that mum's diagnosis is Post Encephalitic Syndrome. She is currently in hospital with a chest infection. We have been in discussion with various people to put a plan in place for her care for when she's discharged. Wishing you and your family all the best.