Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

@andyjustin

I have nine diabetic autonomic neuropathy, diagnosed 2 1/2 years ago plainly life-changing based on my symptoms, which are progressive, but are being maintained by medication. I understand that the future I anticipated is no longer in the future. I will live every day another and just adjustment learning to live with my symptoms. Some days are better than others my symptoms come and go they run the gamut. . Some days are better than others my symptoms come and go they run the gamut anywhere from tangling. to problem swallowing concentrating a bit with my balance arbitrary changes envision hearing bodily functions they come and go. They’re like bad relatives. They keep coming back even though you don’t want them to important to keep some sort of sense of humor and a positive outlook even in those dork moments they come and go to sharing on this website seems to help me by hopefully helping others who who are experiencing the effects of neuropathy to all have a good day and keep your head up and your spirits

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That’s funny. I thought I was the only person who described them as bad relatives 😃

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@cb3

There is always hope. Believe that. Are you seeing a physical therapist?

I'm on the TENS crusade right now. I'll be receiving my TENS unit from Amazon today. TENS is an electrical stimulator that can help reduce pain, and because of that, I believe it can help with mobility: your mobility. There are many people at this group that use TENS with positive results. I suggest you search TENS here and read the messages. It's a hot topic right now. And I am so eager to try out my unit today and see if the neuropathy in my feet goes away, so I can walk and exercise with ease. Keep the faith. Hugs, CB

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DOES THE WHETHER AFFECT

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@kathieb48

I also have PN, not related to diabetes. Has anyone had vision problems (double vision) or hearing problems due to neuropathy? I'm trying to figure it out.

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Hello Kathie,
I think we all need to remember and remind ourselves that neuropathy is a very weird condition and not too well known by medical providers. There are no concrete causes and definitely no treatment. Each person will have different symptoms. However, funny you should mention vision as I just saw my neurologist on May 1st for the second time and it's the second time she's telling me to go to an ophtalmologist. I'm in the midst of making an appointment and just waiting for the neurologist to put in a referral so I can get a sooner appointment than July.
As for hearing, I've had pulsatile tinnitis in my left ear for a number of years now. I have no idea if neuropathy exacerbate that. So far I have not looked into it.
Wishing you the best and take care,
gus

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@3740

DOES THE WHETHER AFFECT

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I don't know if weather affects neuropathy. I've never noticed any difference in pain, etc. when it's cold outside.

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@valko194

I've had knee replace in 2009 then the other in 2024. I have neuropathy since about 2005. Can you exercise the pain, numbness, pins and needles hands legs and feet away. Days are fair but agony is loss of balance and cannot walk without a walker or cane. Is there any hope?

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Knee surgery is not officially recognized as a cause of neuropathy yet I know quite a few people who developed neuropathy afterwards, including myself. Not just the surgical side, both feet.

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@artscaping

@user_ch98d0b5c - Well, I fit that condition...idiopathic peripheral neuropathy. Unlike John, mine comes with a ton of pain. The possible cause may be previous injuries like falling off horses and down mountains. I am happy to offer what does and does not work for me to provide some relief. Just let me know and I can send you a private message or post for all.

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Would appreciate any suggestions. Am on Gabapentin

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@serenafix

Knee surgery is not officially recognized as a cause of neuropathy yet I know quite a few people who developed neuropathy afterwards, including myself. Not just the surgical side, both feet.

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Hello serena,
could it be those who developed neuropathy after knee surgery were already predisposed to neuropathy and without symptoms prior to their surgeries and the surgery trauma triggering the neuropathy?
The reason I am saying this and I don't know if it compares, is when I had a right middle trigger finger surgery and was doing very well with therapy after less than 2 weeks and suddenly I developed what no one would have known, Dupuytren's contacture, where the right middle and ring finger would close shut by scar tissue under the skin that turns into ropes and contracts. The surgeon who did both my carpal tunnel and Dupuytren's contarcture surgery at the same time told me that the contracture was triggered by the trigger finger surgery done three or 4 weeks prior to the second surgery. Believe it or not, I had a functional hand capacity test for 3 hours and the hand was deemed permanently damaged and disabled and I am right handed. the hand will not fully open or close and I can perform very small things with it. The numbness and pain in it can be hellish most days. That's on top of my neuropathy and cerviacal and lumbar radiculopathy.
Take care and keep smiling,
gus

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