GBS/CIDP — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.

GBS/CIDP

ClaytonGirl
ClaytonGirl Member Posts: 3 Listener
I have CIDP. Is there anyone who has CIDP or GBS. Thinking of moving to wales

Comments

  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @ClaytonGirl & welcome to the forum.

    Just in case others don't understand the abbreviations (I certainly had to look up CIDP), it seems you have Chronic Inflammatory Demyelinating Polyneuropathy. The other related condition you mention is Guillian-Barre Syndrome which seems to be more the acute counterpart of your disorder.

    I hope others who may have these conditions may reply. I'm very sorry you have this problem & if you have any other questions, please just ask.
  • jonno1971
    jonno1971 Member Posts: 11 Listener
    Hi I was diagnosed with CIDP last week. 
  • ClaytonGirl
    ClaytonGirl Member Posts: 3 Listener
    Oh so sorry.  Don’t give in to it. It’s not the end of the world. 
    I have had CIDP for 10 years now.  Yes there are times when I struggle but that’s when I let my head take over or when I don’t take my medication when I should.
    My medication is Lyrica Pregabalin 25mg 50mg and 150mg.
    Nightime is my problem BUT that’s when I have chopped down trees or have been Line Dancing. I am not stopping either of these. They are my life. 
    My Hospital and staff are fantastic. Stay away from stress they say BUT that’s easier said than done. 
    Please keep in touch. 

  • jonno1971
    jonno1971 Member Posts: 11 Listener
    Hi thanks for your reply. I start ivig treatment monday ..I seem generally always weak but still have better days ..stress! Well pip just said no so i am very stressed. IRS incouraging that you still.seem to do stuff ....
  • jonno1971
    jonno1971 Member Posts: 11 Listener
    Sorry its encouraging you still remain active..my problem is being jot able to work. 
  • ClaytonGirl
    ClaytonGirl Member Posts: 3 Listener
    Let me know how you go on. We are off to Devon to mind the family dogs while they go off enjoying themselves. My husband loves the village it has 2 shops AND 2 pubs. So we master walking down to the village and then up the hill to the pub. The hill is harder going home .  Many short stops but we do it. Keep your chin up. Truly you can live your life. Don’t give in. If I get low I think of my daughter-in-law who is young and has MS. She’s brilliant and lets me sit on her knee on her golf buggy when we are checking the horses. The only thing is her legs kick out and I end up with my chin on the handle bar. ?
  • jonno1971
    jonno1971 Member Posts: 11 Listener
    Thanks have a lovely trip..all the best x
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @ClaytonGirl pleased you &  jonno have 'met.' Hope you have a great 'dog sitting' holiday.

    @jonno1971 if you start a new thread about your recent PIP claim, others here will be able to help with their advice if you're looking to go for a Mandatory Reconsideration.
  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hi jonno and Clayton girl.....I hadnt heard of CIPD either...but seeing the full name makes me think about when I was diagnosed (wrongly) with MS...demylination plays a major role, doesn`t it?
  • kazzy1
    kazzy1 Member Posts: 31 Connected
    Did you move? I'm in Wales too and left with residuals from GBS. I bet you're finding the NHS and whole care system a bit archaic compared to England x

Brightness

Complete our feedback form and tell us how we can make the community better.