Anyone have Post Polio Syndrome?

Dotty2sticks
Dotty2sticks Online Community Member Posts: 1 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hi, just joined today. I was born with polio in 1959 and am wondering if anyone else has had polio and is now suffering from PPS?

Comments

  • Richard_Scope
    Richard_Scope Posts: 3,693 Cerebral Palsy Network

    Hi @Dotty2sticks

    Welcome to Scope's community! It's great to have you here.  Just to get you started we have a How To Guide here, you can see all the latest posts here, jump in and get involved and don't worry we are a friendly bunch!  
    If you need anything, just let us know. 

  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Welcome to the community! :)
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Hi @Dotty2sticks, and welcome! I'm tagging in @Spennylad who has also discussed Post Polio Syndrome on the community- hopefully you'll be able to chat!
  • Spennylad
    Spennylad Online Community Member Posts: 13 Connected
    edited July 2018
    Hi @Dotty2sticks ,  I was born in 1952 and had Polio in 1954.  I am now suffering from PPS.  Have you developed any symptons of PPS yet?
  • dernie1
    dernie1 Online Community Member Posts: 5 Listener
    Hi, I was born in 1954, and in 1956 had a severe form of polio. About ten years now, I started to feel weaker and more symptoms are coming. Joints pain, breathing difficulty and coughing. EMG shows an active progresive degeneration. Since now I didn't found any treatment.
  • exdvr
    exdvr Online Community Member Posts: 324 Empowering
    Hi @Dotty2sicks.....I had polio in 1950 at age of 2 and made a reasonable sort of recovery until 2003 when things went on a downward spiral. STILL SPIRALLING.  The local NHS barely know about polio and while sympathetic don't really officially recognise PPS.  I'm now immobile on my legs and even driving my Motability car is getting to be a struggle.Thank goodness for my scooter.    Take care.
  • exdvr
    exdvr Online Community Member Posts: 324 Empowering
    Sorry....that was obviously meant to be @Dotty2sticks !
  • colinc1
    colinc1 Online Community Member Posts: 2 Listener
    Hi all, I had polio in 1958 at the age of 3. I now have PPS (first started around the age of 50. In 2008 I had to take early retirement from my job becasue I could no longer cope. I saw a neurologist consultant in 2008 who totally dismissed PPS, said it doesn't exist and he totally belittled me. In 2017 I had a major abdominal operation. The surgical team put the problem down to weakness casused by polio. Since then I feel I've aged 20 years, it's become much worse in the last 6 months, everything is a struggle. My current GP hasn't got a clue about polio or PPS. I'm at my wits end.

  • Richard_Scope
    Richard_Scope Posts: 3,693 Cerebral Palsy Network
    Hi @colinc1
    Good to meet you and welcome to the community. PPS isn't my area of expertise but I have found some information that might of use when talking with your G.P.  Post Polio Syndrome -NHS and the British Polio Fellowship
  • colinc1
    colinc1 Online Community Member Posts: 2 Listener
    Hi Richard, thank you for welcoming me. My mother first told me about PPS, she sent me a press cutting so I became aware, this is when I saw the neurologist. Today I contacted the British Polio Fellowship and they emailed me some info. The info absolutely confirms my symptoms and mirrors them precisely. I'm joining the BPF and will attend one of their help groups. I want to find out more and whether there is any help I can get, even a disabled parking badge as I can't walk so far theses days. Because I've struggled to work, we've even been using foodbanks. The Universal Credit people couldn't understand my problem...it was...you can walk, you can drive, you can take any job.  They failed to understand how tired I get, even with just mental work. I had a major op 18 months ago (problem caused by polio) in hospital for more than two weeks and since then I feel I've aged 20 years or more. No one wants to understand. Speaking with the BPS, they encouraged me to demand to my GP to see a specialist of PPS. I have an appt with my GP next Monday, I'll let you know how I get on. Once again, thank you :)

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