What is Idiopathic?
 

Idiopathic seems to be all the rage these days. Something is only idiopathic when no cause is found, not when a cause is not looked for.

I ran across this info:

Without the aid of DNA and autoimmune testing, about 30% of peripheral neuropathies remain idiopathic.1 Among idiopathic peripheral neuropathy cases, DNA testing ultimately identifies about 42% of the cases as Hereditary Motor-Sensory Neuropathy (HMSN), also known as Charcot-Marie-Tooth (CMT) disease.2 More than 20 subtypes of CMT have been identified to date, and new subtypes continue to be identified based on genetic linkage analysis.3 Genes implicated in CMT include peripheral myelin protein-22 (PMP22), early growth response 2 (EGR2), myelin protein zero (MPZ), connexin 32 (Cx32) and neurofilament light chain (NEFL or NF-L). In addition, mutations in the periaxin (PRX) gene have recently been identified as a cause of both an adult-onset recessive form of CMT and a severe childhood-onset form, Déjerine-Sottas neuropathy.

http://www.neurocast.com/site/conten...ns_06_2002.asp

It is an interesting read, however, do consider it is a company that does do testing, so one must always consider the source. This info is available on other sources, however, this one had the most information.

It seems to me, that PN is diagnosed by abnormal electrical studies, or that if one has normal electrical studies, that a move to skin biopsies is logical for diagnosis for small fiber neuropathy. Or if one has autonomic abnormalities a move to skin biopsies or establishing a central nervous system cause is reasonable. Sural Nerve biopsies are done more rarely these days due to the skin biopsies being so much less invasive.

It seems to me, that no one should go with out a definite diagnosis of small fiber neuropathy, nor CIDP, nor any central nervous system cause of symptomotology. The testing seems to be out there, in general. I can not understand any doctor leaping to any drastic procedures for pain or 'curative' reasons without first having exhausted all the testing to define which type or neuropathy it is.

Seems to me one should get a solid diagnosis of small fiber or CIDP out of the available testing without much ado. Most folks do.

Then those folks proceed onward to have metabolic, toxic and nutritional causes ruled out, then autoantibodies tested, the whole gamut from SLE, RA, SS, myasthenia gravis etc. and the other neural antibodies. Of course, paraneoplastic polyneuropathy is tested for, The the odder things like amyloidosis, sarcoidosis, porphyria, etc.

What is left after all tests are done and no cause is found for small fiber neuropathy is deemed 'idiopathic'. Of those idiopathic, some of them are likely Celiac, which is 'controversially' ruled in or out by blood testing unless one gets the more sophisticated villi testing. So let's rule out the Celiacs from the 'Idiopathics' and identify them as having a 'cause' for their neuropathy.

The above statement says, almost half, '42% of Idiopathics' have a genetic cause.

This means almost half the people with 'Idiopathic PN' are searching for a cause, or left wondering, when, there is a good chance that they have hereditary PN. What the other slightly more than half, have, search me??? It will take an interested researcher to uncover this.

Most insurance does not pay for genetic testing. Even if it does, there are other issues to be dealth with. If you can get the testing, you need to think of the ramifications of the diagnosis, (job discrimination, health insurance discrimination etc.) and the ramifications of not getting the diagnosis (not getting proper treatment and having increasing disability, not getting mobility aids paid for, and potentially not getting SSDI or LTD due to a lack of substantial reason for the PN).

If no one in your family has the disease, then I imagine you would feel more compelled to find out what is going on....if one person has it, you can likely assume your symptoms, if not due to other causes, are due to hereditary PN.

I believe the company that authored this piece does offer a program for those who have no means by which to get genetically tested. They offer a substantial discount for private payers, with a fee cap.

I assume the astute physician rules out a lot of the genetic mutations by symptoms, so that one only has to undergo, several, not all of the genetic analysis or the expense would be substantial, really substantial.

If, truly 42% of idiopathic PNers do have a hereditary form of PN, that is a substantial number of people on here, that need to be thinking about this, because, hereditary PN is not curable, (altho there are some trial treatments that have worked on rodents--lucky rats) and requires a different approach then many other PNs.

Prevention of joint deformity, fractures and preservation of gait and mobility is crucial in the hereditary PNs.

There is a lot of info on hereditary PNs, and I am referring to CMT, Charcot Marie Tooth here, not just the HSNs, which in some literature are distinguished from CMT and in others not. Also consider that the myopathies or dystrophinopathies also can have PN as a component.

Not many folks seemed interested in the hereditary threads, and it is easy to ignore it if you feel you have no family history of this.

Perhaps reading the link below may change some minds, as to what hereditary PN is, and who is can affect. It is totally nontechnical, and a very interesting and somewhat inspirational read. I never associated a pro basketball player with it.

http://query.nytimes.com/gst/fullpag...pagewanted=all

Anyway have a great day.....my part of the country just shut down for the next 12 hours.

They have just pulled the snow plows........let it snow, let it blow....I can still see the top of my mailbox and fire number!

That means at least it will be there for a while, until those plows start up again. Let's see, what kind of new mailbox do I want this time???? Black, white, green, metal, plastic.......

Nice post.
 

I had read this article when it first came out some years back, and it does point out that when one has one of these "orpahn" diseases/conditons, getting the proper testing/diagnosis is all too often a matter of getting to the proper specialist or facility. In the case of an NBA basketball player, no expense or avenue will be spared, as teams have huge investments in their players. For others (without unlimited income), though . . .it may come down to what, and who, the insurance will pay for . . .

There are very few places, even with all the work going on with the human genome, that have the capability to thoroughly test and evaluate a suspected hereditary neuropathy that is not a classic Charcot-Marie presentation. Most of these are tertiary health centers with big neurological reserach departments, whose names are familiar to us--Hopkins, Mayo, Cornell Weill, Mass General, Jack Miller, Washington University (St. Louis), and their affiliates. If one does not have access to these, for whatever reason . . . the chances of remaining "idiopathic" increase dramatically.

In time, as research into genetic underpinnings of conditions proceeds, and the information trickles down to the average practice (and I suspect that may take longer than the actual research), we should have fewer people "unsolved". The reserach is likely, though, to produce a whole new set of questions into the role of genetic susceptibility to certain "acquired" condtions such as CIDP or diabetes. In the end, we may all be able to consult genetic profiles that describe our relative susceptibility to various condition in great detail--and, as you can imagine what use that will put to by for-profit insurers, we'll likely need a single payer health system to get any treatment.

It does open up a whole new can of worms....I suppose if the methods are available to determine who gets what treatment, the insurers will make a case to demand it....such as IVIG for CIDP, or CMT for the braces or the lucky type that might be helped by the progesterone antagonist.

This is one reason I think we are seeing so many, 'soft' diagnoses, such as idiopathic and myalgia....the treatment is the same, anticonvulsants, antidepressants etc. Fairly cheap, and for symptoms for many, effective. Once it gets more specific, things get more expensive in terms of intervention, unless of course, it is just braces, orthotics (not cheap but not the same cost as IVIG or cutting edge drugs).

I have to say, that I can go thru the testing. The fee cap is not unreasonable and I could pay it, not that it won't hurt the budget, it will. On the other hand, all of the CMTs are not yet recognized and I suspect, as my doc said, there will be hundreds.....so the question is, when to do it. I feel they need to narrow things down more for me to undertake the cause.

I would not encourage my kids to do it, if I have it, as my doc suspects, and we isolate which type it is.

Once 'an' individual is diagnosed in the family, you likely know what it is if some one else develops it. A few of the CMTs are more brutal, and then I imagine preconception counseling is warranted.

The concern, which no longer affects me is job discrimination and health insurance denial. Once a child is diagnosed with this, as a minor, or a person as a young adult, it will follow this person for life, and potentially the siblings, and offspring, and I am not that confident in our government to protect us from job discrimination.

It is interesting that as many as 42% of idiopathics could be genetic. They don't tell you that at the clinics. That is both good and bad, I guess.

I would bet that as technology improves, genetic testing will be required before more expensive therapies are attempted on idiopathics. After all, years of IVIG, is far more expensive then the testing for CMT.

It will be interesting to see what evolves.

And you are right, the proathlete or genius will have more resources at their disposal. Although, it appears that this testing is becoming more readily available. As an older adult, if I have it, the information is unlikely to find its way into my grown children's medical records. I am in the perfect situation to be tested, with the least negative impact on others....if I were younger, I would think twice.

If treatments such as progesterone antagonists are ultimately found to alter the course of some CMTs, then I would think that more people would want to know if they had that kind of CMT.

I just find it interesting that CMT so seldom comes up in the context of idiopathic.

Idiopathic, up to recently, has meant 'unknown' to me, not possibly genetic. To me the words, 'idiopathic OR genetic' should be offered up as explanation, not just 'idiopathic'. Then the pros and cons of pursuing hereditary causes need to be discussed with the patient.

I am sure a lot of people will opt to remain idiopathic, for a lot of good reasons, at least for the near future.

I am with you on the single payer system, and I worked in the system.

Who was it here that used to call it....
 

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

In my opinion
 

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....:D

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. :o (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.:D

When I hear hoofbeats?
 

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

Cyclops and others
 

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

:D

I love that and it does reflect my opinion so often! My neurologist has never used idiopathic along with my neuropathy, as a matter of fact, he has never even tried to analyze the type of neuropathy I have, I just realized that. Weird that I never questioned him on the type. Probably because I know my neuropathy is B12 deficiency caused by my celiac disease, which still stumps most doctors. I didn't question him about it, simply because in the beginning, he was so obnoxious about whether or not I actually was celiac, to which I finally told him, "The fact of the matter is, I have been gluten free for 7 yrs and will be forever, so lets talk about my neuropathy!" He didn't actually believe I had celiac until I mentioned Dr. Peter Green one day, then all of a sudden, I became a celiac and he actually realized I might just know something about B12 deficiency after all! He knows Dr. Green, and by accidentally dropping a name, my doctor finally believed me--how sad is that?

He hasn't actually tested for small fiber neuropathy, he simply stated that I probably have "it" in the rest of my body. He only diagnosed "peripheral neuropathy" in my hands and wrists, inoperable carpal tunnel. When I asked him to explain to me why I have all these other symptoms in my shoulders, legs and feet, he then says, "Well, you probably have small fiber neuropathy in the rest of your body." End of discussion. Maybe I should find a new doctor. I have learned to like him, but he doesn't seem to be finding answers for me, does he? Yet, what answers will he find, the ones I already know? He isn't the doctor I originally wanted to see anyways, I wanted Dr. Gudesblatt, who takes months to see, but is more into the B12 deficiency neuropathy, maybe I will try to get an appt with him again.

I'm so lucky to have 2 diseases that so little is known about!!!:winky:

Deb.
If I were you, I'd get a 2nd opinion from Dr. Gudesblatt.
No matter how long it took to get an appt. Where ya goin'?
Couldn't hurt could it? "And if the creek don't rise"..........

Billye----

you were brave!! Driving is huge and certainly scary after pelvic fractures!! Oh my, now what should I do to scare myself???

Going out to the bank today was scary....it is -2 without the windchill and the roads are ice, which we all now know is 7 times harder than concrete, (bad learning experience) and my feet were beyond cold. That still doesn't match your driving....YOU WIN.;)

Now since you are driving, how about coming up to visit me? :eek: LOL....if you want a real scare, LOL....no I am kidding....no one should come here in winter. I should not be here in winter. No matter what the ground hog says we always get 12 more weeks of winter.

I had a bet with my husband after it rained and our first foot of snow melted that the lake would not refreeze....wrong....I lost. I'm a loser.:D

We are sitting under 14 additional inches of snow with 3 to 5 more coming tonight, and it can't seem to get over 10 degrees lately. Sounds like a great vacation destination, hey?

Deb-
There is no need, to not know, for sure if you have small fiber neuropathy....I would ask for the biopsies. My neuro nurse told me that one of their patients got talked into carpal tunnel surgery and when they got in there, it was not carpal tunnel.....it was all for naught, the nerves were deader than door nails and then things were worse due to the cutting.

If you have Celiac Disease, PN is part of the disease, so you have Celiac Disease and PN is a symptom....you do not have idiopathic PN. You likely do have small fiber from the Celiac and keeping that condition in check will likely decrease damage to the nerves. Numb hands are not always carpal tunnel.

I truly encourage every one with an idiopathic diagnosis, who has exhausted all the diseases to take a look at the numerous CMT (Charcot Marie Tooth) categories, which are now being cross diagnosed with the Hereditary Neuropathies, and even with some of the muscular dystrophies also called distal myopathies with neurogenic overlay.....seems like they are all noodles in different soup bowls....there is a lot of mix and match depending on your doc's prediliction to diagnosis. BTW, now CMTs can have normal EMGs or NCS....they used to have to be abnormal for the diagnosis of CMT, not anymore, as they have admitted to two types of CMT, demyelinating and axonal....Axonals may have normal EMGs....but will have abnormal epidermal nerve fiber biopsies....and other things.

If you do have a CMT, see the drug list, as most SSRIs are not on their list of acceptable drugs.

I have never tolerated SSRI's....only one antidepressant is tolerable and that is Welbutrin. I will cross post this on the depression thread. I don't want to rip on SSRIs if they work for some folks---go for it.

And 'onward' for all of us zebras, unicorns, and other strange creatures....where there is a disease there is a cause, kinda like where there is smoke there is fire.....and one needs to use the right extinguisher to put out the fire. (I keep getting confused on those A B and C things....but all purpose cures don't fit PN).

And many of us, are stuck with symptomatic treatment only and hey, that is OK....we do what we can for ourselves. I don't feel like a hopeless case, I feel more cantankerous some days.

It would be great if some drug or nutraceutical would stop or lessen the progress, but for a while anyway, it doesn't look like that is popping out at us...(but I am looking---I don't fail to stop looking-and trying things)....and I don't stop hoping that this gets a 'name and number soon'. As I said, I think it will take some one far smarter than me to ferret it out....and he probably won't look like Mel's poster boy....then again, it could be a very smart she....I don't care, I just hope they know their CTGAs and sometimes U. I don't care what they look like, or what their native tongue is....I just want their superior brains firing on all synapses.

When they do find it, it will still likely amount to prevention of further deformity and disability as much as possible....I found a nice safe stylish basket for my splints, so my dogs don't eat them. (Like they did my first spare pair of orthotics--which were nothing compared to the next set cost wise, I am sure) SEE, we adapt...we are sooo smart.:cool:

I guess all to be said is...
 

BBBBUUUURRRRRRR!!!!!!!!!!!!!!!!!

I would be totally blue and you would have to wait till spring to thaw me out! I believe I'll wave my hairdryer over my toes which are getting [maybe?] sympathetically colder as I think about it.

IF it is any comfort? I saw a 'flock' of robins a couple of days ago... I'd never seen robins in such a large number -about 60[?]. Either mother nature's got things very wrong or there IS hope for the long run...Hope that it's in the short run tho.

Billye I bet that you were either literally or mentally sweating bullets along the way! BRAVE BOLD- Explorer! Driving can be freedom. Just be careful out there! Pick your times and destinations carefully-I plan any trips carefully because of the fatigue...to avoid traffic or waiting-room back ups at the doc's offices. Moving can be a curse, not moving another one. Sigh.

Cycleops? Put simply I PRAY that there will be NO ICE...I do NOT DO ICE! Ever. You are right...one FDNGB and it's all over with! [Fall Down aNd Go Boom] Once is enough thank you.

Hugs to all and better slipp/sliding!? - j

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.

Billye
 

I can't begin to tell you how prove I am of you.. You remind me of the
women in my family believe that's a compliment...They were strong,
my 91 aunt when she needs a ride to the store in winter well she finally
said ok...But when spring comes off she goes..Those women have always
been independent and pround. My Dr. had a massive heart attack at
48. He told my mom she had to learn to drive..He got her drivers tr.
The guy said you would be could Jonnie Joe but you should of done
this years ago. Mom was in her 50's and they lved in a area with alot
of triffce,but she would'mt give up. She got her temp. linc. and my
92 yr. old took the bus from Hannibal Mo. to where my mom and dad
lived in Mi. Everyday she took my mom out and taught her for to drive.

Oh i'm just trying to say I really admire strong women like you.
good for you. Hugs Sue. PS we are in the middle of snow and
ice storm again..

*waving hands wildly in the air* I'm Idiot-Pathetic!!

I do feel that way some days. But it's good to see you all and know that if nothing else everyone's sense of humor is intact. :D

:grouphug: To you all!

Heriditary?
 

First, all who mentioned "idopathic" as "idiot" - I've always made the connection - something this serious just doesnt happen!

Cyclops - on CMT, heriditary, etc... my latest diagnosis for last two years was CIDP - but early on I was told it was probaby heriditary due to having characteristic very high arched feet etc and early onset (but mild) in another family member of PN - and some testing was done by Athena at the time on available genetic tests for these and were negative (about 5 years ago)... I unfortunately dont have access to great medical care - but am seeing new neuro in two weeks - and want her to reevaulate eveything.... do you have info on any more availabe genetic testing I could get for hereditary neruopathies?

I was getting IVIG - and it did seem to help - but the infusions were brutal to endure - and based on what this new doc says and if she agrees its CIDP - then will start up again... however, if its not my true diagnosis - I certainly dont want to use a precious medication that others need so desparately....

:confused:

How in the world does one jump from idiopathic to idiot? There is nothing anywhere to indicate the word "idiot" has anything whatever to do with the word "idiopathic". 'Idio' is a prefix indicating individual or distinct. 'Pathic' is from the Greek-pathos, disease. A suffix indicating (1) a feeling that is affected in a specific way, as in telepathic; (2) a diseased condition, as in cardiopathic (3) a form of therapy or system of medicine, as allopathic, homeopathic, or osteopathic.

The word idiopathic is not a diagnosis or a part of a diagnosis - it's a word that simply means: eitiology, or, cause unknown. It's pertaining to conditions without clear pathogenesis, or disease without recognizable cause, as of spontaneous origin.

Idoipathic
 

I know for myself - often when a doctor tells one their PN is "idiopathic" - it means they dont care to find out, or know how to - determine the right testing for the type neuropathy one might have... it has nothing to do with "prefix" in my reference - it has to do with imcompetence and/or indifference on the part of our health care providers... (a play on words) there are many difference types and causes of PN - and if properly dignosed - it can lead to correct type of treatment and prognosis...... its up to us to pursue the cause of our condition.... not just be complacent and accept what the first doc says to us..... in such cases where PN is severe we need to be our own advocates!

I do remember when....
 

ages ago, on a board lost to the non-archives of computerland-hiccups that it had been coined by a more senior member...
It was a play on the 'ideo' to 'idiot'. I believe due to the large numbers of members at the time, who had to endure the less educated diagnoses of having either a 'mild neuropathy' [then WHY am I in a wheelchair?] to the old standard of 'it's all in your head' [fruitcakes! YOU try making a complete sentence on this bunch of meds].
When you experience enough indifferent doctors risking our lives at times due to ignorance or total torpidity, well the IDIOT nomer seems pretty apt to me. I do distinctly recall laughing for quite a while about it, it had been the first time I felt able to laugh about my situation since my onset ages ago. Such a play on words is a relief for the pain at times, no? - j

To Dan
 

Dan,
I do agree with Dahlek. I think what happened was that they took the phrase "your doctor is too much of an idiot to find out what is causing your disease" and came up with "idiot pathic". I don't think it was meant literally. But thanks for giving me that definition of "pathic". I had never taken the time to look it up.

Billye

Dan is correct.

Semantically.

However, here in the PN forum, we have all learned to think creatively.

Idiopathic means we don't know where this is coming from....etiology unknown....which implies, ALL possibilities have been exhausted, not just some....not just Gatekeeper tests. There are algorithims that are followed and you have got to get pretty far up the branches to get to some of this stuff. In general, most folks get diagnosed on the lower branches of the tree, sooner or later....When later comes you climb the tree....as you get closer and closer to the stairway to heaven....

It also generally means, that sooner or later, probably later, more pathology will manifest and the direction of diagnosis becomes more clear.

There are times, that when all has been exhausted all the physician can do, is await further developments. This is where sticking with ONE GOOD doc really can help one make headway in the odder, rarer conditions. Finding one good doc is the key....and having them stick with you is the other.

This discourse has more to do with the frustration of dealing with being told you have clinically proven PN via testing, and the medical system has no reason for this unfortunate occurance. The conversation began with the statement that 42% of idiopathic PN was really hereditary, which is not idiopathic, but hereditary.

I'm surprised at Dan. He has a better sense of humor than his post implies.
I know it didn't go over his head, possibly just hit him on the wrong day.:eek:
He regularly posts jokes on another PN site. Maybe he's feeling his age?:rolleyes:
He is getting 'up there', y'know. :wink:
But he's probably the most active and agile person, both physically & mentally, that I've run into who is afflicted with 'this crud' (his term).:(
C'mon Dan, you know the term 'idiot-pathic' was ajoke! :D
As well as the observation of the doctor's mental state.
(albeit a seemingly correct, if inaccurate interpretation :cool:)

Maybe he took 'Glenn's' suggestion and went running naked with wolves to cure 'cabin fever'....:eek: I said, semi-clothed....but nooooo, some one had to take it to extremes.

That probably could bring on a rash of 'significant semantic syndrome'....of course, that would mean he wasn't as mentally agile as implied (really running with wolves and raw meat is not advisable---not that everything we ever do is 'advisable'). Hopefully, he is really is physically agile if he decided to attempt this cure.

Like I say, because it can be done, doesn't mean it should be done....then again, some one has to push the envelope....that is how great things are done.

I am hoping Glenn is a good sport.:D (I was the one who brought up the idea, and deserved the verbal klonking---Glenn just suggested a slight alteration in attire.)

My point is that something should not be deemed idiopathic until you rule out the rare, let alone the obvious, hereditary. 'Pathic' has to do with suffering....but 'Pathos' has to do with 'feelings'.

I take no umbrage.
 

In fact, some (on this board and elsewhere) have been considering what would happen if I went running naked with wolves. The betting is that the wolves would howl and run in all directions in abject terror.

Perhaps I should be rented out at Yellowstone. I could provide protection for the elk. (Assuming they also didn't run in abject terror--straight to the wolves.)

It's good to speculate this way from time to time--kind of draws us out of ourselves, helps make our day a little better. I'm sure we all need that--probably more often than we'd like to admit.

Yeah, I almost got possessed enough to go save the coyotes from the guys with guns....turned out those things are faster than bullets and didn't need me....although, I am sure I could have given those guys some form of a cardiac, and not in a good way....I am getting too close to being a senior member, with senior moments, and the physique to match. (If I would just do shorter more frequent posts instead of doctoral disertations, I would have my 'senior' standing---alas, I have only achieved mediocrity---a theme in my life.)

So when are you planning this trip to Yellowstone??? I may have to coordinate my schedule....I do not want to miss this event.

Speaking of canines, my dog, once again, ate my chocolate...how did that thing open my top dresser drawer? (He does this all the time, and no, chocolate for some reason does not bother him---I don't think he is full dog---he has to be part human---his dexterity is better than mine.)


Good bye, turtles....it was nice while it lasted...I had 3 of them last night...I got my valentine candy early, hubby had a craving. It is probably good they are gone...I have more subcutaneous chocolate than is advisable.

Hey, all this talk about wolves and coyotes.... Here is a blog with gorgeous pictures that brightens my day: http://dailycoyote.blogspot.com/ Try it out!

Nice specimen....he has the nicest coyote coat I have ever seen....he must get groomed.

Loved it!
 

Thanks Dakota,
We live on the edge of civilization out here. We still here the coyotes howl during the mating season. My youngest male chihuahua doesn't really bark. He howls like a coyote. It is a hoot! He will put his head back and give the coyote howl. Just like a big fellow. I loved the article about the coyote. The only thing that bothered me is the striking look of loneliness. He looks to always be searching for something.

Billye

Cyotes
 

Hey Dakota - great pix! We have lots of them here in the hills where I grew up - have come face to face to more then want to think about (when walking our dog would have to take a stick because we'd meet up and just waving the stick would be enough to get the to skeedale)... however, in our younger years we tried to keep cats who we let outside - needless to say - after hearing them be dinner a few time (cyotes eat in packs and yelp the whole time) - all my cats since have ruled the indoors only (in an apartment on a busy street that only makes sense anyway) - but they are creatures that demand a bit of respect!
:eek:

Dan
 

Your one cute dude!!!! Hugs Sue