Connect
← Return to My PN? What do you mean it's "progressive"?
Discussion
My PN? What do you mean it's "progressive"?
Neuropathy | Last Active: Jun 23, 2023 | Replies (36)Comment receiving replies
I can surely relate to your issues as I have been dealing with progressive numbness and nerve pain for 10 yrs now.
I have weird symptoms also like my lips and cheeks are numb, can’t feel a catheter in my bladder, can’t feel an exam in my rectum, certain stomach areas also numb.
I was at the Undiagnosed Disease Network in Bethesda, part of NIH where they did a very extensive testing regimen over 5 days, and they could not diagnose me other than to say I had CIDP and that I was unique.
Not sure if cause is autoimmune, genetic,or something I was exposed to.
Right now my life is not as I would like it to be, mybalance is nonexistent, my feet hurt and are numb.
Regular day to day functions are hard for me, and I rely on my husband a lot for help.
I never thought this would be my way of life at 71.
I can’t even go to the beach, or go in the ocean, and I live in Florida.
Replies to "I can surely relate to your issues as I have been dealing with progressive numbness and..."
Thank you for sharing your story!
I feel like am I am not alone
in the world 🌎.
My sister has idiopathic PN. I differ from my sister, who at age 79, is using a walker. She experiences very bad shooting pain. Mineis probably secondary to my Lupus!
I feel we should stick together ❤️ and, find out more information about P.N. For intetest, starting PN groups, like this board, to help educate all people in PN.
Thank you for your response! Blessings. Pat!
Connect
Hi!
Your still not having a once-and-for-all, 100% on-the-mark diagnosis sounds all too familiar. I am a relative newbie: I was diagnosed only last August. However, it already frustrates me that I don't have a more specific diagnosis. Others have told me: "Don't get too impatient. That's how it is with PN, you may never have a specific diagnosis." If only I knew a little more …
When I hear that you're living in Florida but that your neuropathy prevents you from enjoying the beach, I hear an echo of me living in Colorado but unable to enjoy the mountains. It's a real tease, isn't it, the nearness to the beach and the mountains, without the ability to enjoy either, at least not in the way we used to enjoy them. We have to find compensations, don't we? For me, it's the occasional road trip into the mountains.
Thanks for your post! Say hello to the ocean for me, would you? (I was raised on the East Coast and still miss it.)
Cheers!
Ray