[nide44]

I have a gripe.

It amazes me, when reading these posts, that so many newbies are desperate for answers to their questions, woes, problems, etc.
When a very knowledgeable member responds with sage advice, the person immediately says 'but that's not my case, I'm different"
Taking the advice asked for, is probably worse than hearing a diagnoses.
The person almost always refuses to accept the fact that the advice
is 'spot on' and they have to be the exception to the rule.
"That's not me because I........." seems to be their rule.

I think that it is a matter of acceptance.
While refusing to let PN get the better of us,, and not taking anything lying down, is part of how we have to think....... acceptance of the fact that we have this condition and have to modify our lives to some degree, and live around the problem -is paramount. Then we can get on with our lives knowing what we have to do, to make our lives bearable and 'normal'.
Until then, a sufferer is beating his head against the proverbial wall.
Having to be the different one, serves no practical purpose.
Accepting the advice they asked for, is to their best interest.
Live with it, and then...... get on with your life.

[drswami]

they are probably still in the process of learning to accept reality

[echoes long ago]

excellant post......spot on.....except of course that it doesnt apply to me, im different!

[dahlek]

The 'different-ness', tho? Is what makes all the neuropathies sooo hard to diagnose.
Not to mention there are no consistent ways to describe pain levels nor clear cut causes and on and on and on...

Learning about neuropathies is first step to getting to a final step of accepting IT!
It's mostly chemistry and dna, with a slew of other vagaries thown into the mix just to make life messier than it already is.
There are soo many ways neuropathies get us both in onset and timing. Then living with it? With acceptance come coping mechanisms.
The vagaries are what make us different? Yet the results are the same.
What we do with the results if up to US!

Good hope to all! 's - j

[daniella]

I think sometimes we can be so different yet so alike if that makes sense?Regardless of age,how the neuropathy happened,or where it is the feedback from members here in terms of meds,supplements,coping skills,etc has been so helpful to me. I often feel I benefit more here then at my doctors apt.
I felt a lot of what Bob is saying when I was new here so to the new members you are not alone. I hope you can benefit though from the boards like myself and others have.

[JB63]

Originally Posted by dahlek

The 'different-ness', tho? Is what makes all the neuropathies sooo hard to diagnose.
Not to mention there are no consistent ways to describe pain levels nor clear cut causes and on and on and on...

Learning about neuropathies is first step to getting to a final step of accepting IT!
It's mostly chemistry and dna, with a slew of other vagaries thown into the mix just to make life messier than it already is.
There are soo many ways neuropathies get us both in onset and timing. Then living with it? With acceptance come coping mechanisms.
The vagaries are what make us different? Yet the results are the same.
What we do with the results if up to US!

Good hope to all! 's - j

As a new member, I was relieved to see that I was not alone, that I had people and situations to relate and associate with. Yes, we are all a bit different, but not alone. I find that reaching acceptance and coping is the main goal. Most of us reach this point, do great, then, for some the old cliche, a spanner is thown into the works. Coping mechanisms need a tune up
and then we go on with our lives. The challenge is to not get knocked back to square 1. That is why this forum is so very important.

[nide44]

Originally Posted by JB63

......I find that reaching acceptance and coping is the main goal. ....., a spanner is thown into the works. Coping mechanisms need a tune up and then we go on with our lives.

If only the people begging for answers
would believe the answers they get
(from the old 'sages'), and accept the fact
that they must make changes to cope.

Acceptance is the key here,
and 'listening to your 'elders' advice.

[Ed A]

As a newbie, I resemble that remark!!! LOL... I'm actually glad that I've found this site... It's nice to hear from "like" people... Even though every one here is different, at least I don't feel like I'm a statistic... sounds like some people here at least know the cause of their neuropathy... I don't have the $$$ to get the genetic testing (At least $15k per shot)... I found it most troublesome to be an idiopathic (I call it idiodic) neuropathy number... I guess mainly because I don't know what caused it... I'm worried that my kids might have it... and don't want them to go thru what I've been experiencing for the past 5 years...

[nide44]

Originally Posted by Ed A

......... I found it most troublesome to be an idiopathic (I call it idiodic) neuropathy number... I guess mainly because I don't know what caused it... I'm worried that my kids might have it... and don't want them to go thru what I've been experiencing for the past 5 years...

Ed,
Genetic neuropathy is in the minority of causes as there are over 200 known causes for neuropathy. Most of us fall into the overall general terms of :
toxic- anything from alcohol to penicilin shots or flu shots, exposure to chemical from the workplace to the garden, and everything you can think of in between
compression- pinched discs to botched surgery that the surgeon won't admit to
environmental- something causes an allergy or some sort of reaction that acts as a trigger
inherited- the biggest group is middle European klineage and descendants, but is not exclusive there
and a few other miscellaneous things.
'Glenntaj', here- has a lot of info on all of the causes

The main thing is to identify the triggers that cause the severity or onset of symptoms, identify the types of symptoms, and try to find a med or supplement, or something that helps alleviate symptoms & pain. since there is no cure, yet- searching for the cause can be an expensive road that could lead to a dead end, or at least a stop sign that says "Road under construction you can go no farther."
Be content to treat symptoms and not fret about whether your children will get it. Worry about yourself and get your head under control regarding acceptance and experience of treatment as to how to live as normal a life, with PN. If you had diabetes, you'd live with it -and the treatment necessary to live normally. You won't necessarily know why you got the diabetes, but you have it.
This is no different.

[Ed A]

Originally Posted by nide44

Ed,
Genetic neuropathy is in the minority of causes as there are over 200 known causes for neuropathy. Most of us fall into the overall general terms of :
toxic- anything from alcohol to penicilin shots or flu shots, exposure to chemical from the workplace to the garden, and everything you can think of in between
compression- pinched discs to botched surgery that the surgeon won't admit to
environmental- something causes an allergy or some sort of reaction that acts as a trigger
inherited- the biggest group is middle European klineage and descendants, but is not exclusive there
and a few other miscellaneous things.
'Glenntaj', here- has a lot of info on all of the causes

The main thing is to identify the triggers that cause the severity or onset of symptoms, identify the types of symptoms, and try to find a med or supplement, or something that helps alleviate symptoms & pain. since there is no cure, yet- searching for the cause can be an expensive road that could lead to a dead end, or at least a stop sign that says "Road under construction you can go no farther."
Be content to treat symptoms and not fret about whether your children will get it. Worry about yourself and get your head under control regarding acceptance and experience of treatment as to how to live as normal a life, with PN. If you had diabetes, you'd live with it -and the treatment necessary to live normally. You won't necessarily know why you got the diabetes, but you have it.
This is no different.

Interesting that you said "exposure to chemical from the workplace"... This started happening within 3 months of when my department moved from 1 building to a newer building. I'm wondering if something here (IE carpet, glue for carpet, paint) or something else here could be causing it? I have been tested for heavy metals...

I'm a software developer... so, I wouldn't be exposed to some toxic chemicals in other professions...