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GBS / CIDP

kazzy1
kazzy1 Member Posts: 31 Connected
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hi,
Just wondering if anyone on here has either GBS or CIDP.?
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Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Hi @kazzy1 welcome to the community - I wasnt sure what this stood for, am I right in thinking it is Guillain-Barre syndrome (GBS) and chronic inflammatory demyelinating polyneuropathy (CIDP)?
    Scope
    Senior online community officer
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  • kazzy1
    kazzy1 Member Posts: 31 Connected
    Yes that's correct. Basically your immune system attacks your nervous system and destroys your nerves (myelin), resulting in partial or full paralysis.
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  • GeoffBosworth195661
    GeoffBosworth195661 Member Posts: 161 Pioneering
    Hi @kazzy1 firstly how long have you had this condition. Secondly have any of your family ever had (GBS) as this will eliminate a few diagnoses. Thirdly have you had any trouble with your walking. Finally your vision have you had any type of vision problems.    
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  • kazzy1
    kazzy1 Member Posts: 31 Connected
    Errr, firstly GBS is not hereditary, it viral. I don't need a diagnosis as I spent 9 weeks in ICU and had a whole host of qualified consultants run loads of tests. I am paralysed so yes, I do have trouble walking lol. I tend to fall over ....
    Vision problems??? Don't say you are going to try and sell me laser eye surgery lol
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  • GeoffBosworth195661
    GeoffBosworth195661 Member Posts: 161 Pioneering
    [email protected] thank you for replying back and I can understand where you coming from. My questions was not intended to a consultant diagnoses as I would not do so. I just needed a outline of your ability so I can point you to the right people to get the best for you. You have to remember I don't know you and I was trying do my utmost to help you. I do hope things in your life get easier for you good luck.
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  • kazzy1
    kazzy1 Member Posts: 31 Connected
    Hi, sorry, I get fed up being told by people (who usually haven't first hand experience of GBS) that it's acute not a chronic illness.
    What I'm really having trouble is getting my head around the Welsh health system (or lack of it). Having just moved from Devon where everything seemed to work. I guess it's probably because I had the right teams and medical contacts in place. Trying to get a referral for my 4 monthly IVIG is a nightmare, the consultant will obviously need to see me first and there's a 5 month wait for that alone. I've got my old Neuro consultant to try and chivvy things along.
    Simple things like wheel chair services I.e. Punctures is a 3 week wait
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