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susac syndrome

jen1jen1 Member Posts: 4 Connected
edited September 2018 in Disabled people
I have susac syndrome anyone on here with it?


  • Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger
    Hi @jen1
    Welcome to the community! Please forgive me as I have not heard of Susac Syndrome before, would you mind explaining what it is?
    Disability Gamechanger - 2019
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @jen1 and a warm welcome to the community! I believe @bevt2017
     is the only other person to mention Susac Syndrome on the community!

  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I am a fibro warrior !💜♏️
  • bevt2017bevt2017 Member Posts: 353 Pioneering
    Hi @jen1

    Welcome to the community 

    Hi @Chloe_Scope  

    I know it's something to do with the auto immune system.
    My nuerologist did think I had it, but says my tests came back negative.

    My immune system was basically attacking my body. Which as left me proufoundly deaf with other disabilitys.

    Hope someone can help.
  • jen1jen1 Member Posts: 4 Connected
    Thanks Chloe for getting back.to.me, I've had no.help, I fell the other day, must say your falling is getting alot better, haven't bruised as much as I.normally do, still hurt, it's not just the falling it's the loss of my hearing I'm really missing, and my bladder control hate telling oeoplp at 38 I still.cant hold my wee so.have to wear pull ups hate it why i.havnt told many, too embarrassing
  • bevt2017bevt2017 Member Posts: 353 Pioneering
    Hi @jen1

    Has your doctor sent you to a nuerologist, or an ENT doctor?

    I'm proufoundly deaf, with Pherpheral nueropathy and other dissabilitys.

    Due to an infection in both ears, I now have nerve damage.
    So I  have problems balancing and suffer with dizziness (Ataxia).

  • jen1jen1 Member Posts: 4 Connected
    Sorry havnt been back on fort a whilst, I was in hospital 3 years before they new what I had, had all the steroids think
    itd presidone or something like that which makes you fat, I got the hearing aids not falling as much, but I don’t pick my feet up when walking I shuffle, yes auto immune disease with no cure, it dies after 5 years but things you lost like hearing and eye seight will never come back. Nightmare with masks 
  • jen1jen1 Member Posts: 4 Connected
    ive seen so many doctors, I had an nurse to help with my bladder, she got me into self cafaterisation worse thing ever I’m forever on antibiotics so stopped cafaterising, now I’m just always on the loo.  Think I’ve just given up hope now, I have no short term memory so always loosing things it just gets embarrassing, and because I can’t hear on the phone can’t even phone places to check if it’s been handed in
  • OxonladyOxonlady Member Posts: 413 Pioneering
    Hi @bevt2017, do you have hearing problems? If so, there are several charities that could help you. Hearing Link, Action for hearing loss, hearing dogs for Deaf people, etc.
    With regards to urinary problems, I know how you feel. I experience incontinence due to spinal problems. I use pads but sometimes I still have accidents requiring change of clothing! I get up several times in the night so I don't get proper sleep. So I sympathise with your problem. Not sure what we can do about this, apart from not having drinks before bedtime. I've heard that eating pumpkin seeds can strengthen the bladder.
    I hope you find something that will help you to manage your problems. 
    The people on this Forum are friendly and supportive, so at least hopefully you won't feel so alone. 
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