Is there anyone that has Iglon 5 ? My husband was diagnosed with this very rare autoimmune encephalitis in 2020 and I struggle with knowing all the symptoms as there’s so many.
Balance is his main difficulty therefore is a falls risk. As it’s such a newly discovered condition the consultants often won’t know how to answer my questions so it would be great to chat with someone who either has it or knows someone with it so we can compare notes
Hi Shilders 59, I'm sorry to hear of your husband's condition. It seems Iglon5 is a rare condition similar to AI Enc. (my condition, about 9 per million). A quick search on Google provides lots of information on Iglon5, most of it in clinical language. E.g. aealliance.org/ae-types/anti-lglon5-disease/
As you will probably know it is hard to diagnose and has many symptoms. It is a condition of the nervous symptoms , so any action controlled by the nevous system may be affected. Sleep, movement, speech, memory and other functions can be affected, making diagnosis and treatment difficult. I'm being treated with immune suppressants - so I have frequent infections which easily change to sepsis, requiring hospital admission. I also had some treatment with immunoglobulin and others. I found the regime in hospital very stressful, many staff not seeming to know my case or condition. Several times I was refused pain relief as staff were unaware I had several spinal injuries. I made several complaints and even on TrustPilot as the NHS wouldn't publish my reviews.
I'm at home now, being cared for by my wife and as a 74 year-old my life is reasonably normal. I use a walking stick on unfamiliar ground and can walk a mile or so without any trouble. Back pain from old injuries is a constant issue, I take morphine and paracetamol.
Physical and mental exercise is essential, however basic and even a game of patience can be a challenge; also Scrabble and crosswords. Drawing, sketching, writing and writing may also help. I have to make lists and plan ahead in order to keep track of things. A change of environment or any unusual stimulus can leave me bewhildered. Calm and quiet and lots of sleep are ideal for me.
AI is a nasty condition but I have improved enormously since first diagnosed. I hallucinated, had difficulty remembering who I was, I knew I was married but had no memory of the ceremony, or many other life events. In some ways my loss of memory was helpful, as many bad memories were forgotton or had become faint.
When discharged five yrears ago I could barely put a sentence together, now I can have a conversation and can follow the news and current events OK. As I said before, there is lots of information on the internet including videos on Youtube. These should help a lot.
That's all from me, I hope I haven't strayed too far from your enquiry, best wishes, G2.
Hi Gandalf2
Thank you for your reply. I’m sorry to hear about your condition. You certainly have had it tough!I have googled Iglon5 but as you say it’s a lot of clinical language I don’t understand. I only realised recently that Iglon 5 is an autoimmune encephalitis! Nobody had used that term before in 2 years!I asked my husband’s consultant if there were any forums so he gave me the encephalitis society web site which I phoned. They were so helpful. They knew about iglon5 which most people don’t and sent me through the post lots of info on autoimmune encephalitis which was so useful. There were lists of possible symptoms which my husband ticked a lot of the boxes. It took a year to diagnose, then was given high doses of steroids, plasma exchange, chemo and Rituximab. They say he’s plateaued at the moment but his balance and ability to walk far isn’t great. He uses a wheeled walker indoors and a mobility scooter when out. We now have a stairlift and lots of grab rails around the house to help him. His memory isn’t great either and can get quite confused.
His nights have improved although he still has sleep apnea so has a CPAP machine
He can’t seem to accept this is how it is now and has frequent falls because of impulsiveness and thinking he can’t seem to do something but can’t.
He’s not allowed to drive anymore which has taken his independence away. He hates relying on me.
He now goes to a day centre 3 days a week to give me some time to do things without worrying about him. He loves it.
I hope you continue to improve
Take care
Hi Shilders, it takes courage - more than you think you have. But that's us, and we get through. Keeping active and making jokes keeps us steady and there are things we have to relearn. My wife says 'I'll be back shortly' - I say 'don't call me shorty'.
We have a fox that comes by and sleeps in the garden, so we leave food. A squirrel dangles on the bird feeder getting a free breakfast. Birds float in the sky on the breeze, in the distance an aircraft lands. It's all terrific and there may be nothing else like it in the Universe, pretty good stuff.
As I said I'm about in my fifth year and darned lucky to be here. Because of my poor memory, every day seems pretty fresh and has a newness to it. I go to sleep, wake up and the world is still there, clouds rolling by. I'm on antibiotics again for a UTI infection, with no immune system to speak of I'm relying on ABs every few weeks and it's great to feel them revving up and bumping off the bad guys. Hurray!
'Take care love', that's what we say in Yorkshire. We call each other love. You've got what it takes. Best wishes, G2
Hi, I am really sorry to hear this. Have you been in touch with our support line to have chat? You can get in touch here - encephalitis.info/contact-o...
Yes thank you. I did contact them. They were very helpful
Hi yes my husband was diagnosed on 2nd of October this year.its been such a awful thing he's 74 he can no longer walk or sit up in bed he has damage to the left side of his brain was in hospital for 9 weeks came home 5th December but back in due to infection in the chest he has confusion personally changes he's like a child learning to do certain things he's life was taken in a split second on that day. It's also made him incontinent so have to have carers come in he also has autoimmune encephalitis we don't know how long it will take for him to get his mobility back he's having physio but his anger is so bad with this awful disease so I know what your going through take care Ellen
Hi Luvnyrick
Sorry to hear about your husband. Did his symptoms come on suddenly? It took a year to diagnose my husband. His coordination went first when he noticed he was missing the golf ball. He’d played golf for years. His fine motor skills deteriorated. His memory was erratic, his speech changed and he found swallowing tricky without liquid to help. He had night disturbances which were quite scary.He also had a seizure. He now has sleep apnea so wears a CPAP mask. His balance is problematic.
Fortunately he hadn’t had any hospital stays due to Iglon 5. The encephalitis has affected his brain with short term memory issues and doing things impulsively without thinking of his safety. He’s still in denial really. His mood is changeable.
He feels he’s lost his independence as someone needs to be with him most of the time.
I do hope any treatment helps your husband. It certainly has kept my husbands at bay. 🤞
Take care
My husband was fine at 10/45 that morning and by 10/50 he had a seizure we’re he’s speech became dibble dabble not making any sence he was taken in hospital and in 4 days was diagnosed with autoimmune encephalitis were bad cells attack the good cells in his brain he had plasma exchange but didn’t work it’s taken his mobility were he can’t walk or sit up in bed by himself it’s affected his memory he does have that choking thing also he’s very confused so basically it’s damaged the left side of his brain the whole thing is a complete nightmare he was in hospital for 9 weeks discharged on the 5 of December but was taken back in on 12th of this month with a chest infection and he couldn’t stay awake which was scary paramedics called it semiconscious were he just couldn’t wake up this disease has taken away his life in seconds he hasn’t really improved much he’s 74 our 3 grown up daughters are heartbroken to see what’s happened to there dad it’s like he’s in another world. I hope your husband makes a complete recovery recovery take care we live near to Chelsea London x
Struggling big time 
General questions about Encephalitis
What a journey! Thank you! 
Wish there was an encephalitis group based in Miami, fl 
