HNNP

lee1971 · October 2017

I suffer with hnnp. Just recently had genetic test which was positive. Just wondering does it get worse as I get older?
Im in a lot of pain when u get an attack.

CaderMac · October 2017

Hello @lee1971! Welcome to the community.

I know there are some other people on the community with experience of HNPP who may be able to help you - @firegem71 and @amandawisehall are you able to offer Lee any words of advice or support?

lee1971 · October 2017

Thankyou. Much appreciated

amandawisehall · October 2017

Hi Lee, can I ask how old you are? How long did your first episode last for? Amanda

lee1971 · October 2017

Hi Amanda, im 46. My first episode lasted 3 weeks or so. At the moment im in no pain. Then it can come anytime with no warning. Lee

amandawisehall · October 2017

Hi Lee, thank you for replying...you will find that as you get older you will have more episodes, even if they only last a few moments.

Did your doctor talk to you about sitting positions etc? I find gentle swimming helps relieve some muscle pain.

steve51 · October 2017

Hi @lee1971

Welcome to our online community/website.

I do hope that we can help & support you.

I have found you some info on our site that might be ok for you ??????

https://community.scope.org.uk/discussion/35857/new-to-this-forum-hnpp

Please Please let me know if I can help you further ???

HNNP

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