1. < Neuropathy

Idiopathic Polyneuropathy: My endless journey to a near-diagnosis …

Posted by Ray Kemble @ray666, Mar 29, 2023

Hello!

I have been here before. Several times each time posting under what seemed to be the correct topic at the time, such has been my maze-like journey to a diagnosis. I'm not there yet (that 100% positive diagnosis), but I'm closer. Only yesterday, I met with my neurologist, and he came as close as he dared come at the moment, calling my ongoing balance problem idiopathic polyneuropathy. Since I also have some cervical stenosis and am already scheduled for an MRI in two weeks, my neurologist suggested we plan to talk next after he has had a chance to look over the results of the MRI. This journey to a diagnosis has been a long one. I'm curious to know if others have had a similar experience. And what was the outcome? I'm doing PT for balance and taking B-12 and alpha lipoic acid (the neurologist's recommendation). But are there other things I might try at this point, something I might ask my neurologist about? I believe others' experiences with this condition would be of immense help.

Ray (@ray666)

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

berniep | @berniep | Apr 10, 2023
In reply to @dbeshears1 "I used to shy away from people because of inappropriate shoes for events. There is only..." + (show)
@dbeshears1

I used to shy away from people because of inappropriate shoes for events. There is only one shoe that works for my brain, feet, safety, etc, and they’re not very dressy and look weird with shorts. I am so happy that I got to the point of not caring what other people think and how they might judge. People can’t help what they don’t know or understand. It’s all taught me a lot about compassion and relevance.

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May I ask what brand and type of show you found to be comfortable?

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2 replies
berniep | @berniep | Apr 10, 2023

You should also check your vitamin B-6 levels since an abundance of this vitamin can be toxic to nerves.

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1 reply
Debbie | @dbeshears1 | Apr 10, 2023
In reply to @berniep "May I ask what brand and type of show you found to be comfortable?" + (show)
@berniep

May I ask what brand and type of show you found to be comfortable?

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Skecher’s is what works for me, hopefully a picture follows. I wear them with a well cushioned sock for shoe fit since my foot is a little narrow, but also to make sure I have a well supported ankle, and to keep my cold toes/feet warm. The only drawback I have with these is I seem to have to replace every 5 months, but I wear them 12 hours a day, every day. I am in search though for a good sandal I can wear at the pool this summer, but inside the water, I have a water shoe since I just am unable to walk barefoot comfortably on any surface. I buy from Amazon, $50-$60, slip-on skid resistant. Skechers Women's Ghenter Srelt Work Shoe

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aaron_az | @aaroncush | Apr 10, 2023

It has definitely been an interesting discussion on not giving up, one that I am slowly losing as I trend towards idiopathic again. The right side of my body has been screwed up since I was six months old and had a massive stroke, meaning I depend on my left side. My probably idiopathic neuropathy is almost 100% on my left side only, meaning I don’t have faith in trusting my left side anymore. Without that trust what can I do but say no to any physical activity? Landscape photography (black and white) was my favorite hobby but I haven’t taken any pictures in two years (attached is one sample from Jordan Pond @ Acadia NP). An adult onset allergy to black pepper killed restaurants 8 years ago so that tosses out most non-physical social occasions too.

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2 replies
Ray Kemble | @ray666 | Apr 11, 2023

Hello, all! I have been absent from this Forum for the past few days and will likely be absent for a few more. At home I have lost both my telephone and Internet service. (I am sending this from a friend's home.) I have kept all of the recent posts and will respond in due course. In the meantime, yes, let's do keep battling this neuropathies! It may be a frustrating battle, but a worthwhile one all the same. Cheers! ––Ray (@ray666)

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Debbie | @dbeshears1 | Apr 11, 2023
In reply to @aaroncush "It has definitely been an interesting discussion on not giving up, one that I am slowly..." + (show)
@aaroncush

It has definitely been an interesting discussion on not giving up, one that I am slowly losing as I trend towards idiopathic again. The right side of my body has been screwed up since I was six months old and had a massive stroke, meaning I depend on my left side. My probably idiopathic neuropathy is almost 100% on my left side only, meaning I don’t have faith in trusting my left side anymore. Without that trust what can I do but say no to any physical activity? Landscape photography (black and white) was my favorite hobby but I haven’t taken any pictures in two years (attached is one sample from Jordan Pond @ Acadia NP). An adult onset allergy to black pepper killed restaurants 8 years ago so that tosses out most non-physical social occasions too.

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That picture is so beautiful; peaceful and serene

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lisasgroup | @lisasgroup | Apr 11, 2023
In reply to @berniep "You should also check your vitamin B-6 levels since an abundance of this vitamin can be..." + (show)
@berniep

You should also check your vitamin B-6 levels since an abundance of this vitamin can be toxic to nerves.

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As can a deficiency.

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berniep | @berniep | Apr 11, 2023
In reply to @dbeshears1 "Skecher’s is what works for me, hopefully a picture follows. I wear them with a well..." + (show)
@dbeshears1

Skecher’s is what works for me, hopefully a picture follows. I wear them with a well cushioned sock for shoe fit since my foot is a little narrow, but also to make sure I have a well supported ankle, and to keep my cold toes/feet warm. The only drawback I have with these is I seem to have to replace every 5 months, but I wear them 12 hours a day, every day. I am in search though for a good sandal I can wear at the pool this summer, but inside the water, I have a water shoe since I just am unable to walk barefoot comfortably on any surface. I buy from Amazon, $50-$60, slip-on skid resistant. Skechers Women's Ghenter Srelt Work Shoe

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Suggest you looking Finn Comfort shoes and sandals which are made in Germany. You can find these on line or at a quality shoe store. They're pricey but are built to last. They can be re-soled as well.

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berniep | @berniep | Apr 11, 2023
In reply to @berniep "May I ask what brand and type of show you found to be comfortable?" + (show)
@berniep

May I ask what brand and type of show you found to be comfortable?

Jump to this post

Finn Comfort shoes and sandals are made in Germany and are built very sturdily. They are pricey but are well worth it in my opinion. Check on-line for distributors.

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Ray Kemble | @ray666 | Apr 13, 2023
In reply to @julbpat "Regarding the vertigo and migraines, you might want to read up on Dysautonomia. My occasional dizziness..." + (show)
@julbpat

Regarding the vertigo and migraines, you might want to read up on Dysautonomia. My occasional dizziness that had developed over the past year has now changed to a distinct pattern. I didn’t realize this immediately. I was seen by a Dysautonomia specialist in February, and run through a gamut of tests. Turns out my blood pressure and heart rate fluctuate very little under testing (tilt table, etc). I’m starting to think that this specific pattern of dizziness is neurological (by that I mean a type of seizure) - something I plan to share with my neurologist this week. I have small fiber neuropathy, misdiagnosed as fibromyalgia until a year ago. All these other seemingly unrelated physical issues are most likely related to some weird diagnosis - my sister has the same symptoms.

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I find most interesting all mentions of dizziness. Over the years, among the many symptoms I've reported to my doctors, the only symptom I've never felt the need to report is dizziness. So often, my doctors don't believe me. That has me thinking that the vast majority of us good folk with PN experience some degree of dizziness. ––Ray (@ray666)

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