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!!!

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? 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.

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.

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.

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.

To you all!

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....