You guys made me smile....

I have always found that the 'idio' in that word does lend itself to your interpretation.

Honestly, there are ways of ferreting out what is causing neuropathy in most people. The cost of ferreting it out, is, in the long run, less than treating what is NOT the cause of the neuropathy...(been there and racked up some substantial bills for unwarranted treatment) At the time it seemed logical...

'If you hear hooves, don't think zebras" That is the medical herd mentality that ends up costing every one money and agony. By the time most of us get to research facilities, zebras are all that are left....as it should be.

I am not idiopathic. I don't think any one with this condition or any other medical condition has it 'just because'.....that sounds too much like the reasoning my parents used, when they wanted to exert control...and put me in my place, which on some days, I needed.

I am 'some kind of autsomal dominant hereditary', which isn't far removed from idiopathic, given the explosion of the human genome, we need to whittle this pathology down a bit more before we big potshotting a bunch of gene loci. It is not reasonable to say to a doctor, find my oddball genes....you at least need the neighborhood.

That takes several individuals, mostly from abroad but educated here, to sit for hours in front of electron microscopes and data bases, and endless, upon endless combinations of CTGA and or U, depending on DNA or RNA...or you can do some of the footwork yourself.

I am not complaining because, I think some pretty good efforts have been made to pinpoint this oddball combo of alphabet soup I have....(must be chicken noodle mixed in.) I have good reason to expect things will actually proceed a bit faster for me now...of course, I got 'sicker', which always help to light the way....I think we are now on the right path to minimize the damage that this entity can cause....provided I get the 'right' ICD-9 code.

I don't expect any one's premiums to reflect searching hundreds of thousands of base pairs unless it will benefit more humanity than myself and my progeny when kids in Africa die for lack of a bed net or basic vacinations....just as I don't expect any one's premiums to reflect useless treatment that could have been used for genetic testing or the appropriate 'adaptive' devices to make life worth living.

I am all for symptomatic treatment, however not at the expense of omitting the necessary diagnostics that predict disability or give prognosis, and a chance at preventing further pathology...


I am a zebra (unless I am a unicorn, and then we all know that means never finding out what I really am---I will amount to that one disease you see on neuro.wustl, and when you look at the incidence it says, 'one' or 'one family' in some obscure province if I am very, very 'lucky').

I roughly, know what color family my stripes are, but it will take a bit more to confirm the shade and tone....right now it is cheaper to have me settle for idiopathic, as then I can not draw on funds from certain non-profit groups that assist folks like me (and I need the help, even with insurance).

Kinda sad, as those organizations offer help with exactly what I need, and countless other 'idiopathics' need...For me, it is just a matter of time, months to a year or so, to get it all settled.....and likely my insurance will bite it. In the meantime, it isn't easy to watch joints deform or bones fracture, nor to grow weaker due to not enough ambulation.... That may happen anyway, despite all my efforts, some of which I feel are gargantuan.

I am lucky to be insured, have a bit of spare cash, not much mind you... every one is not so fortunate. I have family members not so fortunate....and me doing their groundwork saves every one, even you premium payers money...

No one wants us 'idiopathics', perhaps it is in the name 'idio'....or perhaps 'pathic' which bears too much resemblance to pathetic.

So, moral of my tale....I always have a tale, and I am working on the morals, you know...I can't seem to get to the point of anything without metaphor or analogy. (By the way I got published last week, LOL)...humor article.

My moral, it is worth the fight, not to be idiopathic....unfortunately you must do a great deal of digging on your own....be your own medical Indiana Jones. When you whittle it down enough, then you have to ask for the specific diagnostics.

In the mean time be wary of treatments that are not helpful, or are hurtful....

keep looking, even if it does at times seem obsessive....

counter that with doing something wild and crazy.

You can research your condition without being your condition....

you can challenge your condition akin to climbing Everest somedays.

There is a quote, 'Do something every day that scares you.' I like that quote....some days it is scary to walk to the mailbox....other days I can traverse hill and dale. Somethings like unassisted skiing would be moronic, not inspiring. I have matured.

Most days I find it therapuetic to scare myself, albeit, lately in a safe way...

Oh, and I am very careful not to acquire any bad karma while either researching OR while frightening myself into mental health, lest my disease get worse.