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Looking for some tips to help my dad please?

Posted , 3 users are following.

nifter
nifter

Hi all, my dad has Polyarteritis Nodosa and Mononeurtitis Multiplex.  He was diagnosed in November 2015 at the same time as being diagnosed with Hep B, following months of generally feeling unwell and then loss of feeling in his feet, followed by his hands.  One specialist has said that he will recover fully in 2 years and others have said he'll never recover.  He has adapted really well so far but as yet seen no real improvement.  I was just wondering if anyone had any hints or tips or idea as to where we can get some more information/help.  He can walk very short distances with calipers but they cause him a lot of pain.  Apart from all the drugs and medical bits, he has tried reflexology, acupuncture, massage and has sporadic physio.  My parents are currently just feeling very depressed about it all and feel as if no one really cares (obviously NHS being understaffed and underfunded) or has the time to spend any time helping them trying to find something that may help him see a tiny bit of improvement.  Anything that you can suggest would be really helpful.  Thank you!

0 likes, 10 replies

10 Replies

  • margaret22116
    margaret22116 nifter

    Posted

    Hi there. Sympathy for your dad's situation. I don't know the answer to your question but I have a form of vasculitis and recommend you speak to vasculitis uk who jave a free helpline. They are a great resource with good information and I feel sure they could give you some useful advice. I will look for the number for you or google it.

  • philtw
    philtw nifter

    Posted

    Hi,

    Very sorry to hear that,......i had PAN 30 years ago and after 5 years i was fully off my tablets without relapse, I was 51 years ol when I was diagnosed in 2013 with GPA and am taking the same medication.

    People respond differently to medication, I would contact the Vasculitis Center as previously mentioned they are very helpful.

  • nifter
    nifter

    Posted

    Oh thank you both, I will definitely get on to them. Can I ask, philtw, what is GPA? Is it another form of vasculitis? Your story will give him great hope, despite his other complications, thank you!
  • philtw
    philtw nifter

    Posted

    Hi,

    GPA is anotehr form of vasculitis, Granulomatosis with Polyangitis (Wegner's)

    • nifter
      nifter philtw

      Posted

      Oh I'm so sorry to hear that! Hope the tablets are working again for you this time. Sorry to keep asking questions but, when you had PAN, was your mobility affected?

  • philtw
    philtw nifter

    Posted

    I ocundlt walk for a couple of week sdue to the pain in my joints and i was eventlually admitted to hospital as they didnt know what i had, but once on the tablets my mobility came back after a few weeks.......
  • margaret22116
    margaret22116 nifter

    Posted

    One other thing....it may not be a useful suggestion but my dad had an amputation 2 years before he died. Completely unrelated reason. He did not have any form of vasculitis. But we managed to persuade him into a mobility scooter. Changed his life and gave him his independence back.

    Would your dad consider that? I know long term it is not what he wants...he wants full recovery. But it was brilliant for my dad.

    I wish him well and hope for a good outcome.

    • nifter
      nifter margaret22116

      Posted

      Thanks Margaret, funnily enough he actually bought a scooter last week! Not quite a mobility scooter but some automatic three wheeled thing. Hopefully it will give both my parents a bit of independence!! Thank you for your help and wishing you well also.
  • philtw
    philtw nifter

    Posted

    Hi

    I'm just wondering how your dad is now ?

     

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