Neuropathy and incontinence

[ornitorrinco]

I was diagnosed with idiopathic bi-lateral peripheral neuropathy last year, which is medical-speak for "I'm loosing sensation in my feet and legs and they don't know why." (I'm not diabetic, and my neurologist did a very comprehensive workup to eliminate many other potentially scary causes.)

I didn't think it was that big of a deal, but in the last few months my symptoms have been increasing in strength, so I started looking up long term prognosis for neuropathy like mine. One realistic prognosis includes me losing bladder control and possibly even bowl control.

It's kind of ironic, I guess. I've wanted my whole life to wear diapers for fun. Now that I see a possibility where I don't get to choose when I wear them, it is kind of terrifying. So I guess I'm wondering what your experiences have been for either yourself or family members with neuropathy, and how it has affected their quality of life.

[Note: I'm not seeking medical advice. I have plenty of doctors who are giving me good medical advice, but I'd like to know some real-world experiences of people with neuropathy, and any "living with" practical advice that you may have to share.]

 

[dogboy]

My wife suffers from Neuropathy in her foot and hands. She is diabetic and had her right leg amputated below the knee a year ago. Your situation sounds quite different, however. When she had feeling in her feet, they hurt a lot. Now, it's just her hands that hurt. It's also hard for her to handle small objects like earnings.

I assume your doctor has warned you about the possibility of becoming incontinent. I think all you can do is stay in touch with your doctor. One thing my wife and I have learned is that when something changes, see your doctor immediately. Don't wait to see if it will persist, because not only do things have a way of persisting, but they can get worse in a short period of time. Infection, especially in the feet, can happen with Neuropathy, so protect your feet by wearing good shoes and check them every day or night for cuts or even cracks in the skin.

 

[Bigbabybret]

Yessss!

I myself have no feeling in my right foot, and several other random places as well...

Be very careful, and if anything changes see the dr ASAP!

Keeping your already affected areas from cuts/etc is crutial...I've had a couple bouts of infections without feeling it...gets bad quick!

I'd also say, get a good neurologist, have them do an emg to map where things at at, and can keep an eye on changes...

I know what has caused my issues...but still keep an eye out for changes...

I see my neurologist every two-three months at least...