This is my first post to the group---
I am a 72 year old male who was diagnosed with PN 10 years ago. I experienced pain only the first 2-3 years. The pain subsided for the most part but numbness started progressing over the years. It started at the ball of my feet and has now progressed to my knees. Also, experience numbness in all my fingertips. I have had Electrodiagnostic testing twice over the years and have visited the Neuropathy Department at Kansas Univ. Medical Cntr. in KC several times. Since my symptoms do not involve pain, there is little that can be done, I was told.

Now a NEW problem that I question whether it is related to my PN, or not. For 10 weeks I have been continually dizzy and out of balance when I walk or move my head. It is not a "spinning", but more like I am walking on a waterbed, having to hold on to walls to travel across a room. This is not sporadic, but 100% of the time, unless my head is not moving. My ENT did VNG testing to rule out inner-ear problems. All the VNG tests were negative, but suggested the unbalance might be due to a brain stem lesion, or most certainly a Central Nervous System problem. So, a brain MRI was ordered, and it was negative with no tumor or other lesions seen. Now I have been referred to a Physical Therapist specializing with balance disorders. I have been twice, and she does not express a hopeful prognosis.

The predominant comment is that this is all related to my PN which I have had over the years. I hesitate to accept this, as I don't feel I can go throughout the rest of my life totally out of balance and dizzy. I am looking for a more specific analysis and diagnosis with possible treatments, but don't know what the next step should be for me.

Welcome rccarson.

I often describe my issues as walking on a floating pier. I suggest asking your doctor about autonomic testing. These odd balance and perception quirks are fairly common in autonomic issues and orthostatic hyptotension.

If you Google at all, you might search Amyotrophy. I have been diagnosed with this plus Neuropathy. I think they may be double cousins or something. Good luck, Ken in Texas.

Aloha rccarson... I am new here too and what a great forum. information and support and understanding. I too feel like I am walking on a waterbed. but when I remember that I am trecking on numb feet... I try not to let it stop me, just slows me down a bit. As I teach those elderly I care for... when I walk I say to myself..."Pick 'em up and put 'em down" and just march right along... focus

I have that feeling also - like walking on a waterbed or a trampoline. It came on with my SFN and was pretty constant for several months. It is now quite a bit better, but I usually experience it for every day for varying lengths of time. I have hot and warm sensations in my ear (the ENT term is fullness). I'm getting more tests next week. I will report back what the final diagnosis is.

My ENT testing from a local teaching hospital has been completed.

My rotary chair test showed normal function of the balance system in the ear and ear nerve pathway. The VNG test showed no signs of an inner ear problem. It did show "up-beating" nystagmus which is an indication of a central, or brain, balance dysfunction.

So I guess that my diagnosis is most likely central vestibular disorder or problem in the brain balance system. I've already had a MRI. So I, for the life of me, am having a hard time understanding what the etiology could be. This is so frustrating!

That seems to mirror my situation. I contacted my Neurologist that I used a few years back for my PN. She is director of the Neurology/Neuropathy Dept. at Kansas Univ. Med Center. She suggested that my balance-issues and dizziness might not be totally related to my PN. She suggested that I obtain a referral for an MRA which I am scheduled to have in 4 days. This will analyze the arteries, unlike my MRI which I had.

Good luck. I'm still enduring the walk "on a suspension bridge" every single day.

Well that is interesting about analyzing the arteries. I will definitely follow up with my neurologist and see what she thinks about that.

I'm not sure that I entirely agree with my central vergito diagnosis. My ENT assessment took place 1 year after onset, which makes it more difficult to assess according to the audiologist. I can thank my HMO for not making that referral....ugh. Thankfully the neurologist at the teaching hospital saw the nystigmus and made the referral to ENT. I also have pain in the left side of my face sometimes, which is very MS like and is what landed me the MRI of the brain and spine. It's almost as if someone is putting pressure on my cheek bone and behind my eye. I have a hard time seeing clearly often and have pain up the left side of my throat as well. This came with the body-wide burning (more upper body - face, back of head, neck, arms etc). What a confusing bunch of symptoms. It almost sounds like vestibular migraine...which seems like another wastebasket diagnosis, frankly.

I did have roaring tinnitus in my left ear for months at onset. And I actually had 48 hours of hearing issues last summer. It was like the volume level was turned up in my left ear. I also heard things in a higher pitch in my left ear (as compared to the right ear) and it would also split into 2 sounds. I'm sure there are ENT medical terms for this, but I haven't put much research into it. The audiologist told me to call them immediately if this happens again. I'm just so drained...

Sounds alot like diabetes related neuropathy, have you been tested for diabetes b4, if not you should see your doc about it. diabetes neuropathy starts in the feet, burning then numbness, that is ascending towards your head.