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Unbearable Neuropathy

Neuropathy | Last Active: Sep 25, 2023 | Replies (67)

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@ray666

@njed Good morning, Ed

Frankly, I also wish I started my binder or any proper recordkeeping a long time ago. Just as you point out, a doctor's first question is often, "When did you first experience symptoms?" I fumble every time that question is asked of me. I have to answer and say, "Oh, I think about ten years ago (long, long before I started my binder) when I first noticed having occasional episodes of wobbliness." But I can never answer a doctor with the specifics I wish I had at my fingertips. Now, though, I'm keeping good track of such details. I've my binder to turn to before any appointment so that I can be ready with dates, symptoms, duration, etc. I also suggest to anyone – especially someone whose only recently been diagnosed with PN (but to anyone, actually) – start note-keeping (a 3-ring binder like mine, a manila folder, or an online file … whatever works best for you. The information you save will one day prove invaluable.

Ray @ray666

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Replies to "@njed Good morning, Ed Frankly, I also wish I started my binder or any proper recordkeeping..."

I couldn’t agree with you more, but how do you get by with using it in your doctor’s office? I always take a one-sided single page typed sheet of paper with very organized bullets of relevant information or updates from last appointment to share, with a copy for them. Some doctors embrace it appreciatively, and I see later on in my visit report that they did indeed use/reference it. But just as many doctors refuse it, as if I’m handing them evidence that could be used against them and they think it’s better not to accept! I went to use my cell phone notes function once to pull up a report and was asked to put my phone away. I have been asked to put my pen down while taking notes, being told they’ll give me a visit report with all I need! Regardless of whether they take it or not, if it’s the type of 6 month or annual visit I want to make sure I get in what I want vs walking away realizing I forgot something, I try hard to read from my simple, easy-to-read large font one-pager, regardless of whether they accept a copy or not. But a binder? While I think it’s absolutely brilliant, I’m glad your doctors welcome it, because mine rush through my appointments so fast that you wouldn’t be given the time to turn a page. I would love to hear how you might handle a doctor who might be resistant to your exceptional note collecting and sharing? (And I’m very happy if you’ve never been met with resistance, as that would be the ideal state!) Debbie