IDIOTPATHIC?
Truly to me, the phrase 'ideopathic' didn't strike fear into my being as much as it does now. IP means either truly the docs don't have a clue, or more likely they are too lazy to look beyond their noses.
About gentetic testing tho, I agree with the concerns of both of you, C and Glenn in that such testing can be and will be a medical, ethical and fincancial two-edged sword. I am wrestleing with the whole 'concept' delemma myself. The delemma is that IF it is determined that I do have genetic components to my own CIDP, I could ultimately be eligible for my IVIG thru both medicare and my supplemental plans. To qualify for the IG under medicare, it's got to be 'inherited'. I am working up the courage to be an advocate about the issue in this area, as best I can travel tho. This is a purely selfish goal tho.
More basically, and I know, Cycleops-that your circumstances are far more complicated than mine tho. IS what is so wrong with the 'MEDICAL BUSINESS" that they just have not curiousity to seek out answers? Those that HELP their patients?
So many medical professionals are soo slaggard in their approach to diagnostics if they really diagnose at all.
It scares me because we are all of the same age [kind of] and all fairly well educated and fully functional active people BEFORE this PN in all it's varieties and 'blessings'. It scares me because there are probably a dozen others for each of us who have not found this resource and are neglected, in actuallity, by their physicians. It scares me that environments we work/live or have worked/lived in could be defiinitive connections to our issues, yet no one has interest in that aspect.
I agree with you Cycleops about the genetic/family aspect. It's not an issue for me, but for my siblings and their many children and grandchildren I do have great fear to find out about genetic issues....for them.
Geesh! It's scary enough to be scared with a progressive neuropathy of any kind! To think that it's 'shared' in the genes is both amazing and spooky at the same time. I can only hope deeply that those in the genetic research fields have the ethics to control how such information is used. It's unlikely, but possible? Thing is the tools that can cure can also do the opposite. Genetics is one of those tools. History is testament to that. And will be again.
Every single day I wake up and am able to get up, I count my blessings, as most of you all do in that I CAN get up! [I Believe BobB had a quote to that effect, it's stuck in my mind and helps keep me going! Thanks Bob for that quote]
Dealing in the here and now tho...treatment of symptoms is the norm. The only norm! We have to deal the cards we are dealt, and play them the best we can to get better treatments than are currently available. Prudent review of any medications, treatments and therapies are now our only defences against quackery, indifference or malparactice.
I sure wish it were different? Hugs to all! - j

Idiopathic means the doctor is a pathetic idiot and can't figure out what's wrong with you!!!

Dorothy

j., I've forgotten the quote (must've been a while ago) , but that's the general idea. Dorothy, I'm with YOU !!

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.

I no longer think HORSES, or ZEBRAS.
I think [Przewalski's horse]
http://nationalzoo.si.edu/Animals/As...act-phorse.cfm
You are soo right about being your own Indiana Jones? Thing is, we want to scream, shout and pound our docs with what WE see as facts...and they do not want to hear us or care or just do not know and won't admit it? Unless you find one doc you can twiggle the curiousity with.

I too am lucky that my insurance covers my conditions and treatments. I do live in an apprehension daily that next month they won't. It is written into the plan 'description' that they can. Tho not without adequate notices. Of course their definition of 'adequate' and mine differ a bit?

'NOt being your condition, and challenging your condition' are keys to LIVING with any condition and often conditions. Learning as much as you can, and then trying to do some things about it USING the 'systems' we have to work in/with is key to getting the best we can out of what is given us to work with. As many know, tho, the other 'players' in this endeavour [doctors and insurances] don't always play fair or knowledgeably.

Bob, go back about 2 years and you will find that 'quote'...I've loved it and and appreciate it daily! It's often given me courage to get out of bed and look for GOOD things to be found [if they can be found].

On we go to attempt to slay more dragons! With many of us, we've other medical issues that complicate it all.....different dragons, so to speak, to slay! - j

Hey! Life does go on, with us or without us...better with us! I say!

This has been wonderful...Thanks was trying to read it to my nurse,
had us both laughing and crying. Hugs All Sue

I'm slaying my dragons!! The very first diagnosis I got was idiopathic. I'm just not a person to live with the unknown. I've always had to have the answer to my questions. Drove my grandpa mad.

Idiopathic is pathetic. Don't settle for it. Even if you can't find the reason, you will know in your heart that you tried every single thing you could do to beat the beast. I battle every single day with a disease that has no cure. But everything they find from my body will be one more thing they know that will eventually help someone else.

Cyclops, I did something this week that scared me. I drove again for the first time since breaking my pelvis. I just refuse to give up and give in to this disease. I just think that if I keep trying I can do it whatever it is. It's too easy to give in and agree with a doctor who has halfway done his job by labeling you "idiopathic". I have a diagnosis now and if a cure becomes available....at least I will know that the cure is for me and will not be one of the people setting on the sidelines saying "That cure won't help me, I'm idiopathic".

Billye

I forgive any doctor that gives his or her best to diagnose, and learns in the process.

Too many doctors don't try, and stop learning at the point early in their careers when they think they know so much they don't have to listen to their patients. I know that physicians are busy and overwhelmed, but the good ones find time to listen, to troll the literature, and to attend conferences and seminars.

You know, Wings....it is good to put in a word for the docs....they are overwhelmed....

Having worked in the system for a lifetime, I have never seen, as much demanded of docs as now....the health care system went corporate, and docs are cash cows for CEOS. I would not go into medicine now.

I have most GPs or internal med docs tell me what is going on with me is over their head and I know more about it than they do.....'Tell me what you need.' That is to a great extent scary (on the other hand I run like crazy from any doc who insists I do or take something I feel is not indicated)....my neuro feels like there are lots of things they can handle, and he should not have to direct....such as pain management....it is a bit of being a hot potato, to a great extent....right now my neuro is holding the hot potato and has accepted that position for me. I can not complain on iota.

I have had pretty good docs lately, I won't comment on the ones I had a few years ago....my condition was classifiable a decade and a half ago, at least...if not even further back...and I would have made different choices in life, based on what I new was coming in the future....I took on huge challenges, that if I had known I was sick, I would have left to the healthier people amongst us. I made financial decisions based on the assumption of relative health.

My current docs got me to where I am now, which is a lot further than where I was ten years ago....'when it was in my head'. We have to endeavor to get selected patients past certain 'gatekeeper' tests. Gatekeeper tests are usually only abnormal in severe disease or in the more common diseases....most diseases are picked up on the usual metabolic panels, rheumatoid panels etc....a lot of neuro diseases is picked up on EMGs, MRIs etc...

I was very fortunate to get a tilt table, due to a very slight abnormality on a max (Bruce treadmill) stress test, usually not done on folks....or I would still have 'fibro and depression' (not to 'dis' those diagnoses, they are valid, but, not as often as diagnosed). Those abnormalites lead to abnormal epidermal nerve fiber biopsies, an abnormal muscle biopsy, an abnormal thermoregulatory sweat test etc........the solid clinical proof, that my afflictions were physiological and not 'in my head'.

At least now, thru the process of ruling out, I know I likely have a heritable condition, will need splints, antispasmodics etc....and I know to watch for this in my kids...likely a 50/50 chance.

Within a few years, if not months, I will likely have a locus for this, and then I will know for sure, what, name this has or what name they decide to give it.

Not all patients need to go beyond gatekeeper tests. If one has a clinically provable neuropathy----I think it is reasonable to pursue all available tests to uncover the cause....many neuropathies are treatable and those patients should be treated, their conditions managed...

For those that are not---those folks deserve to know what they are up against, and what resources they will need and what challenges are reasonable to undertake...especially challenges that take decades to complete....and resources should be made available to them.

No one should be told their axons are degenerating for 'unknown reasons', even if it is heritable and not able to be stopped, people do have a right to know and have resources opened up to them.

Oh and we have ICE, our roads are not concrete or asphalt right now, except in a few places, and on the I system....our rural roads and even city roads are covered with hard ice with sand imbedded in it for traction...with interspersed patches of concrete. As snow gets packed down over days and days, it gets to be ice....it is like ice with kitty litter on it, with road poking thru here and there. If you can keep one tire on concrete you do OK...you get used to driving on it....we won't have any ice storms for a while now...it is too cold...we have 3 to 5 inches of fluff coming tonight.....I don't know what is worse, that blowing around or the 14 inches of heavy snow we got last week. Ice storms that plague the areas south of us more often are worse....altho we get more ice storms lately with warmer winters....THIS is not a warm winter....this is what I remember as a kid....

As far as cold, once it is below 10, it all feels the same, it is just a matter of how fast it feels the same....

Boogers freeze pretty fast at zero and poke the inside of your nose, and your jacket makes weird noises, cracking noises, at around zero. Sooner or later, you will die if you stay out there for very long....but staying inside all the time, makes one insane. This is why I post wierd things....walls are closing in....and I am 25 miles from the closest indoor mall. Eh, plus I am not into shopping all that much right now. I wonder if my tongue will stick to the mailbox???

Cyclelops, I don't know where you live, but it surely does sound ccccccold! Here in Atlanta I get bored with the winter weather, chilly and grey, but it rarely gets really cold. Nevertheless, we are heading to Florida in a couple of weeks to try to get a little warmer for a week or 10 days. Hope to see some manatees.