Are the symptoms weird?

@robindancer5678, I don't have polyneuropathy but do have small fiber peripheral neuropathy and I can relate to the some days I feel better than on other days. I'm not sure if this is because I'm just focused on other things and my neuropathy is still there in the background and I'm not thinking about it. You might find these other discussions on polyneuropathy helpful where others have shared their experience.

--- Idiopathic Polyneuropathy: My endless journey to a near-diagnosis: https://connect.mayoclinic.org/discussion/idiopathic-polyneuropathy-my-endless-journey-to-a-near-diagnosis/
--- Small Fiber Polyneuropathy: https://connect.mayoclinic.org/discussion/polyneuropathy/

I don’t have polyneuropathy, but I do have small fiber neuropathy, and I can relate to the waxing and waning of symptoms too. I have multiple other chronic pain syndromes, and it’s common…it’s basically “consistent to be inconsistent.”

But hopefully over time with treatment, the up and down can be less drastic or the flares less frequent.

What does your doctor or neurologist say about it—do they feel it’s related to your diagnosis? Since you mentioned you’re newer to the diagnosis I can see it making sense to confirm it’s within normal with your diagnosis and make sure it’s the correct one and everything.

I hope it gets better soon.

I have no idea about that because mines happened ALL overnight . I just went to bed and woke up with severe tingling in my legs and hands. The pain so severe at times shooting through my body. That is such a blessing that you can still excersise and be mobile as you are. However I guess if it starts like that , that’s the only way I can imagine that it would begin. Sorry I couldn’t be more of help to you. Have an amazing week though.

How do you improve the balance problem with neuropathy?

I have no balance from a brain injury, I also have cancer, when my weight is higher my balance is better. Don't know if that helps

Hello, robindancer5678! (@robindancer5678)

Welcome! You're not alone in wondering if your symptoms are weird. I often wonder the same thing. I was diagnosed in August of last year with idiopathic peripheral neuropathy. My neurologist didn't go so far as to say "polyneuropathy," small or large fiber, sensory or motor, but I'll be meeting with him again in two weeks when I hope to get more clarity.

My PN appears to be situated chiefly in my feet, at least for now. I'd initially gone to see my neurologist because I had been noticing how my balance and gait were beginning to play tricks on me. I've had a few falls but no serious injuries. The EMG I had a year ago showed measurable sensation loss in my feet, although without that EMG, I might never have guessed I was losing sensation.

I, too, have good days and bad days. On my good days, I can walk short distances, a little unsteady at times, but with little fear of falling. On my bad days, I'm always on guard, carrying a cane, letting my fingertips trace walls, countertops, and other stationary surfaces. I'm blessed that I still have no pain, just my alternating good and bad days. And like you, even on my bad days, I can climb on my stationary bicycle and peddle without any unusual weakness. If I try walking on those bad days, I can only go a short distance before my legs feel weak and I'm ready to sit down. Mysterious stuff, this PN!

I'm glad you posted your question about weird symptoms.

Cheers!
Ray (@ray666)

Ever think of using a wheelchair and such on your bad days.. My dad is a stroke victim, uses a cane ,wheeled walker and wheelchair combo depending on his balance and or pain.

You can try physical therapy or look up exercises for balance from neuropathy. There are traditional exercises, or also graded motor imagery and mirror training (helps retrain the brain to connect with the painful areas of the body to improve function).

Hello @rplg, I would like to add my welcome to Connect along with @emo @jwkelly72 @ray666 and others. Like @emo has suggested, I also have been concerned about my balance and have been doing a few different exercises but I setup an appointment with a physical therapist last week and was really happy that I did. He showed me several different exercises that I can do at home to help with the balance. I have difficulty doing them but loved my conversation with him when he mentioned we have to retrain the brain. I said, oh, you mean using neuroplasticity? He's eyes lit up and he said exactly! Here are a couple of videos of the exercises he showed me. Both are difficult for me and I need to be close to a wall or railing for the tandem walking and next to a chair or railing for the single leg stance.

--- Tandem Walking: https://youtu.be/50hy4hkkTSg
--- Single Leg Stance with Support: https://youtu.be/3j0O6jRe8uY

Have you thought about working with a physical therapist to help your balance problem?

Been there , done that, my balance and ability to walk ended in March 1990. Best wishes and recovery