HNNP

lee1971

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

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

Thankyou. Much appreciated

amandawisehall

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

lee1971

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

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

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 ???