non diabetic neuropathy

[S_dillow]

i was just diagnosed with neuropathy in both feet.is this part of ckd?non diabetic.

[WYOAnne NKF Ambassador]

It is not a part of CKD. Some of us depending on our kidney disease diagnosis have an autoimmune disease. Some autoimmune diseases can cause neuropathy as well as kidney issues.

[S_dillow in reply to WYOAnne]

thanks WYOAnne.i think me and ye olde drs are going to have a chat.

[WardijaWardija]

No I don't believe so.I have really bad diabetic neuropathy in my feet, hands and bladder. I've had diabetes for 40 years. I'm insulin dependent.

2019 my kidneys were fine, no issues. Fast forward to early last year 2022, I was diagnosed with stage III CKD.

This is the result of being put on necessary heart medicaion in 2020 but NOT BEING GIVEN THE 3 MONTHLY BLOOD TESTS REQUIRED TO CHECK KIDNEY FUNCTION AS PER THE CARDIOLOGISTS INSTRUCTIONS TO MY GP PRACTICE.

As you can imagine, I am not happy about this and I know there are many more patients out there experiencing the same or similar situation. It's outrageous.

I hope you find out what's causing your neuropathy. It's a very painful condition and not a cureable condition and very difficult to treat. I've been on various mega-strong controlled pain medications and none of them even touch the sides.

Good luck

[KidneyCoach NKF Ambassador]

It can be. It's not a "common" issue but yes people can get renal neuropathy. My understanding is your kidney function needs to be fairly low for a long time to get to renal neuropathy. Other things contribute to this like blood pressure and more. Blessings

[S_dillow]

thanks i didnt know that.curious.the blood pressure thing explains alot though

[orangecity41 NKF Ambassador]

I too have peripheral neuropathy of ankles and unknown reason. I was diagnosed at CKD 3b. I was also diagnosed as pre-diabetic.

[Blackknight1989 in reply to orangecity41]

It’s such a fun existence isn’t it…lol. Only way I can describe it is it’s as if my legs feet (from the mid-thigh downward) are shaped like the bottom of a Boston Whaler fishing boat. Like land skating! Ugh!

[orangecity41 NKF Ambassador in reply to Blackknight1989]

Know what you mean. Sometimes my neuropathy acts up. More pills.. Glad is a med to help. I have 2 neuropathies.

[LoveChoc]

Hey, I get what I call 'hot foot' - feet feel hot and tingly (not to the touch). Have had it for years, only got CKD diagnosis 2 years ago. Apart from high BP I have no other known conditions. I told docs about it and got shrugged shoulders. Always wondered if its linked and the autoimmunine disease connection has got me wondering. Let us know how you get on.

[S_dillow in reply to LoveChoc]

ok i will thanks

[Blackknight1989 in reply to LoveChoc]

Don’t you love the physician response when faced with a knowledgeable patient. I’ll just shrug it off and not bother to look. In their defense our affliction has gone “untaught” for so many years, many times we who have live several years with this do know more about OUR OWN personal disease. I know they are pressed for time but I believe the standard of “wait till I can do something(dialysis)” but until then well just watch your diet… my current nephrologist “diet doesn’t matter to CKD patients.” Really sir?? He happens to be correct FOR ME AND my illness but uh maybe you should research that a little…lol!

[S_dillow in reply to Blackknight1989]

holy crap thats way out there....no wonder things are so screwed up....

[Blackknight1989]

CKD can cause idiopathic peripheral neuropathy. Think logically for a minute. One, if the main filters were f the body don’t work effectively for say 25 years could that cause issues similar to what diabetes causes in up to 75% of T2D patients. Sure it could, with several DECADES of improper filtering always leaving the body a little “contaminated” (for lack of a better term) the body can’t as effectively process toxins. Toxins build up higher than that of a healthy peer results in damage to peripheral nerves. I cannot feel my feet and haven’t since April 2021 but my A1C is 5.4%. I got LOTS of issues but T2D isn’t one of them (praise the Lord as I’d probably be taking the long nap currently). Regardless, yes long term severe CKD can cause peripheral neuropathy but I had so many tests I probably gave over 3 weeks 2 pints 🍺 f blood. It was brutal so absent anything else my long term (almost 27 years) CKD caused the neuropathy (If you need documentation I can provide a study or 3 just LMK). My best to you as always!

[S_dillow in reply to Blackknight1989]

wow you really went through the wringer.thanks for the info im getting hit with stuff on all sides lately still trying to sort it out

[Blackknight1989 in reply to S_dillow]

I totally get it. I hope it helped somewhat. You need anything additional I’m around! As always my best to you and your journey to you best health!

[S_dillow]

thank you big time.i just need a big honking ma llet when im dealing with doctors is all lol

[Blackknight1989 in reply to S_dillow]

Nice, loved that comment! Lol!