Prion disease

billbenn 7 years ago

2 replies

I am struggling with a chronic neurological disease. If it is a prion disease it will be fatal. Does anyone have any advice to offer about coping with symptoms?

Support 7 years ago

Hello Billbenn,

I am sorry to read you have been struggling to cope with your symptoms. I am uncertain what symptoms you are currently experiencing, but if we are able to help we will do. On the Marie Curie Support line we cannot give advice and we are not medically trained however we do have some information that we feel may help you which you can access here: www.mariecurie.org.uk/help/terminal-illness/manage-symptoms.

You mention “if it is Prion Disease...” waiting for a diagnosis or follow-up appointments with a specialist can be a particularly fretful time. I am pleased to see that you are reaching out to others on the forum and I hope that you get a response to your post shortly. Many people tell us that talking to others can be helpful this could be a family member or friend, your GP or perhaps ourselves:

If you would like to talk about things in more detail please call our Free phone Support Line on 0800 090 2309, or drop us a line via Web Chat: https://www.mariecurie.org.uk/help

Best Wishes

Claire

Marie Curie Support Line

billbenn 7 years ago

To Claire,

Thank you for taking the time to reply to my message ..........from billbenn