Has anyone ever heard of Bickerstaff’s Brainstem Encephalitis?

thespiceman said:

Hello @CraftyPollyAnna   Pleased to meet you welcome.

Thank you for joining and sharing.  Sorry what you are going through. I am sure the whole community is here to give you support and reassurance.

Understand the situation with your husband.  I am sure some one in our community will know and help you.

One suggestion I would consider is to look on line for additional information and support.

Some of the conditions, illness and disabilities have often specific explanations on line. Plus usually a support net work to go with the disability, illness or condition.

Hope that helps.  I know this is a distressing time for you but you need to know the right information.

We are a supportive, friendly community.  Care and share.

Please ask if we can advice on anything.

Please also contact our team on 0808 800 3333 for any further advice, information plus support you might need.

Pleasure to meet you .

Take care

@thespiceman

Ami2301 said:

Hi @CraftyPollyAnna welcome to the community!

I am terribly sorry to hear what has happened. I have just looked around and it appears that you are the first member to have mentioned Bickerstaffs Brainstem Encephalitis. Is your husband still in hospital?

Hi Ami2301. He was in hospital for two months.  We were just saying this morning that it is now a year since he has come home.  He is so limited at what he can cope with.  Really the Encephalitis part of the illness has affected his brain.  A little like MS as the myelin sheath around the Brainstem becomes damaged/shattered  and in his case it is not completely repairing.  He gets very depressed but will not admit it.  Part of his personality as he was never sick so this has hit him hard.  He did a physical job and the next day it was all gone.  Understanding his moods and response is hard for me to adjust too.  Real learning curve for me too.  He gets excessively tired.  His coordination is a mess, as he knocks things over all the time.  He cannot even carry a cup of coffee without spilling it.  His condition is associated with Miller Fisher and Guillain Barre.  They found it hard to decide which variant he was suffering with.  To be quite honest he has parts of all of them.  When he came out of hospital he could not walk or talk and basically we were expected to just get on with it.  I realise we both have to live with it now but it would be good just to have more understanding of the illness.  I keep feeling if I search enough I will find another person who has experienced this condition.  Thank you for replying to me.  Nice to have someone to talk too.  Love Pauline xxx

Type your Hi Ami2301. He was in hospital for two months.  We were just saying this morning that it is now a year since he has come home.  He is so limited at what he can cope with.  Really the Encephalitis part of the illness has affected his brain.  A little like MS as the myelin sheath around the Brainstem becomes damaged/shattered  and in his case it is not completely repairing.  He gets very depressed but will not admit it.  Part of his personality as he was never sick so this has hit him hard.  He did a physical job and the next day it was all gone.  Understanding his moods and response is hard for me to adjust too.  Real learning curve for me too.  He gets excessively tired.  His coordination is a mess, as he knocks things over all the time.  He cannot even carry a cup of coffee without spilling it.  His condition is associated with Miller Fisher and Guillain Barre.  They found it hard to decide which variant he was suffering with.  To be quite honest he has parts of all of them.  When he came out of hospital he could not walk or talk and basically we were expected to just get on with it.  I realise we both have to live with it now but it would be good just to have more understanding of the illness.  I keep feeling if I search enough I will find another person who has experienced this condition.  Thank you for replying to me.  Nice to have someone to talk too.  Love Pauline xxx