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My PN? What do you mean it's "progressive"?

Neuropathy | Last Active: Jun 23, 2023 | Replies (36)

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@ray666

I'm sure this has been asked many times before, but as my diagnosis was relatively recent (last August), I'm eager to know what signs and symptoms I must watch for. I'm 78. I was diagnosed with idiopathic peripheral neuropathy (not much more known now than that). My only symptom is poor balance, which may be getting worse but at such an incremental and near-invisible rate that I can't be sure. I have no pain, none at least that I can link to my PN. Often, after an exercise session (stationary bike cycling, stretching, balance work, etc.), my legs may feel weak-ish (my knees, in particular), but the feeling, having been a distance runner most of my life, is a familiar one; I can't honestly say it's because of my PN. What should I be watching out for? If my PN is progressive (and I can't be sure of that, not yet), how fast should I expect it to progress? I meet with my neurologist next in early August, and I'd like to give him a good and specific rundown of any progression I may be experiencing. Hearing from others will be invaluable.

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Replies to "I'm sure this has been asked many times before, but as my diagnosis was relatively recent..."

Hi Ray, I also have idiopathic small fiber PN which really started in my 50s and I'm 80 now. Started with numbness in my toes on both feet and gradually worked up into my feet and lower legs over the years. My PCP told me it was probably neuropathy but with numbness there weren't any treatments that were going to make the numbness go away so I didn't bother with getting a diagnosis until I started worrying about the progression in my early 70s. Progression can be slow like mine was or like others have shared happens overnight. My own opinion is that the only thing that we can do is make lifestyle changes that will possible slow or stop the progression. I do think exercise and a healthy diet are a big help along with what you are doing... learning as much as you can about the condition. Kudos to you!