← Return to New to neuropathy, terrified and seeking advice from you guys

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@dbeshears1

It took me finding this group to help me accept things more. The doctors I had only offered pills to help cope, not one had advice (or time to give) on how to achieve maximum quality of life via exercise, supplements, ointments, diets, mindfulness etc. Zero from them! I didn’t know a single person with whatever I have, or friends of friends, and I know a lot of people. I thought I must have been really rare since there weren’t even any local support groups available for me. This group has shown me I’m not alone, and has been teaching me the “how to live with it”. There’s a wealth of knowledge from real experience here from caring people who are willing to share, so we can experiment and find solutions that may help our individual needs. It’s hard for me to completely accept “idiopathic “ and not still hope for a diagnosis (and of course a Cure for Neuropathy period), but I have accepted that I have to live with it and want to live life to the fullest possible for me. I’m willing to work for it; I do need some medicational help, but cannot be dopey as I already have balance issues🙃. This group has been my lifeline, thanks to all of our mentors, and for all of you in this forum who have been helping me!

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Replies to "It took me finding this group to help me accept things more. The doctors I had..."

Debbie - boy oh boy....you hit home with me in that you don't know anyone else on a personal level that has PN. None of my friends or any family members as well. You begin to think....is this that uncommon? Then, with knowledge thru other people on this website and support groups combined with time, you then realize as several mentors constantly bring up, you're not alone. The sharing of information I've found to be helpful because I feel in many cases, docs just don't know causes, they need a name so idiopathic becomes the label but folks like us who have this know what we're going thru. I feel there is a real cause for all of us with PN, it just hasn't been discovered so for now, share what we know is important and helpful. Best to all and remain positive!