› Undiagnosed and rare conditions
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Has anyone ever heard of Bickerstaff’s Brainstem Encephalitis?

CraftyPollyAnnaCraftyPollyAnna Member Posts: 10 Listener
edited November 2018 in Undiagnosed and rare conditions
I am a carer now to my husband who was an extremely fit man last 6th September. On the 7th September 2017 he had a UTI, went into a coma with E-Coli Euro Sepsis. An I dusted coma for nearly two weeks, then his one functioning kidney failed for quite a few weeks needing dialysis.  He was then left with a rare condition called Bickerstaff’s Brainstem Encephalitis.  This took away his speech and ability to walk.  He has had to learn to walk again but he has no balance or coordination.  His speech is still very poor.  If he had had a stroke he would have immediately had intensive physio and speech therapy. I had to fight for this for him so it was several months before it was available.  It is hard as no one seems to know much about the illness.  Has anyone ever heard of Bickerstaff’s Brainstem Encephalitis?
· Share on FacebookShare on Twitter

Replies

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    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
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
    · Share on FacebookShare on Twitter
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,625 Disability Gamechanger
    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?
    Disability Gamechanger - 2019
    · Share on FacebookShare on Twitter
  • CraftyPollyAnnaCraftyPollyAnna Member Posts: 10 Listener
    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

    · Share on FacebookShare on Twitter
  • CraftyPollyAnnaCraftyPollyAnna Member Posts: 10 Listener
    Thank you.  I have tried so much research but it is so limited.  I have not yet found a support group.  I will keep looking.  I am glad I have found this site.  Love Pauline
    · Share on FacebookShare on Twitter
  • CraftyPollyAnnaCraftyPollyAnna Member Posts: 10 Listener
    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?

    · Share on FacebookShare on Twitter
  • CraftyPollyAnnaCraftyPollyAnna Member Posts: 10 Listener
    CraftyPollyAnna said:
    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?


    · Share on FacebookShare on Twitter
  • CraftyPollyAnnaCraftyPollyAnna Member Posts: 10 Listener
    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
    · Share on FacebookShare on Twitter
  • CraftyPollyAnnaCraftyPollyAnna Member Posts: 10 Listener
    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?

    · Share on FacebookShare on Twitter
  • CraftyPollyAnnaCraftyPollyAnna Member Posts: 10 Listener
    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
    · Share on FacebookShare on Twitter
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,625 Disability Gamechanger
    Hi @CraftyPollyAnna

    I have replied to your post on my wall, the care needs assessment I mentioned in my reply, you can read more about it here
    Disability Gamechanger - 2019
    · Share on FacebookShare on Twitter
  • atlas46atlas46 Member Posts: 827 Pioneering
    Hi

    I've had a good look round for any support groups for BBE, with no luck.

    I think it is because it is very rare disease.

    The nearest I can find is The Encaphalitis Society, who have a support telephone line 01653 699599. Worth giving them a ring.

    I also have found some medical research on the disease in 2014, it's mainly about the onset phase and nothing about rehabilitation phase.

    This research was carried out by Doctors at Chelsea & Westminster Hospital.

    The contact is Dr Emma Horton email address [email protected], I am sure she would assist. I think she is based at Imperial College, which has a world renowned name.

    Have you made your concerns about lack of rehab to your GP?

    I worked on a reseach project for the Stroke Association and identified how important rehab is for stroke victims.

    Let us know how you get on.

    · Share on FacebookShare on Twitter
Sign in or join us to comment.