I'm officially idiopathic....
 

Went to the follow-up consult to all the testing by the neuropathy clinic at Strong yesterday. Strangely, this is the second doctor in a year who's commented that he knew people who'd pay money for my test results. They can't find a thing wrong - no abnormalities, no subtle indications/flags - nothing (no pre-diabetes, no celiac, no sjogren's, no nothing). Perfectly healthy adult male. (So why do I have this?) PN is all this guy does. He said he couldn't find a reason to go any further; he could do a million dollars in testing and still not find a reason. He did say I could try R-lipoic (after downplaying it last time) but not to expect too much, if anything. Then he gave me his boilerplate PN shpiel and cut me loose. Can't say I didn't see this coming.

Of course I'm not delighted, but like a lot of you other folks, our insurance coverage has been unilaterally cut, and we can't afford to travel across the country in search of answers that still may not be there. Time to get philosophical, I spoze....

I asked for and got a scrip for 100 mg gabby as needed for the bad days/flares. Took one last night and was able to participate in furface's obedience class instead of just watching from the sidelines. Word to the wise: Gabby doesn't help one bit when 80 lbs. of canine happy feet point load on peripherally neuropathic toesies.... (-Expletive Deleted-)

Doc

The dreaded word - "idiopathic." Great to know on one hand that it's not any dreaded disease - but SO frustrating that there's no definitive cause for which treatment could be effective.

You mention gabapentin. Wishing you some sort of relief from that.

Just returned from the Headline News segment of Neurotalk up above and found an article on page 4 titled:

New Drug Targets Chronic Pain, Won?t Dull Acute Pain.

Testing sounds as if it's been completed, and this drug seems to show a lot of promise in rats of targeting the chronic pain of neuropathy.

Maybe somebody else at this forum has already mentioned it, but thought it couldn't hurt to bring it up anyway.

You have a furface? Is he a Weimaraner?

Sheltiemom

Congratulations!
 

[QUOTE=Dr. Smith;736116]Went to the follow-up consult to all the testing by the neuropathy clinic at Strong yesterday. Strangely, this is the second doctor in a year who's commented that he knew people who'd pay money for my test results. They can't find a thing wrong - no abnormalities, no subtle indications/flags - nothing (no pre-diabetes, no celiac, no sjogren's, no nothing). Perfectly healthy adult male. (So why do I have this?) PN is all this guy does. He said he couldn't find a reason to go any further; he could do a million dollars in testing and still not find a reason. He did say I could try R-lipoic (after downplaying it last time) but not to expect too much, if anything. Then he gave me his boilerplate PN shpiel and cut me loose. Can't say I didn't see this coming.

Of course I'm not delighted, but like a lot of you other folks, our insurance coverage has been unilaterally cut, and we can't afford to travel across the country in search of answers that still may not be there. Time to get philosophical, I spoze....

I asked for and got a scrip for 100 mg gabby as needed for the bad days/flares. Took one last night and was able to participate in furface's obedience class instead of just watching from the sidelines. Word to the wise: Gabby doesn't help one bit when 80 lbs. of canine happy feet point load on peripherally neuropathic toesies.... (-Expletive Deleted-)



As you know, the word idiopathic has always frustrated me, but now as I wait for more test results to come in because of my high cancer marker (ca19-9.), I can only hope I hear that word again. The truth is, it is good news, it may be frustrating to not know what is causing this, but at least you know all the things you don't have.

I have suddenly become one of those "people who would pay for good test results."

CT of the Abdomen & Pelvis on Thursday...............

P.S. What do you take besides 100 mg. of Gabby (as needed.) That is a low dose, I take 1200mg/day.

Well, I am a bit confused. Your older posts had a long list
of spinal problems, with discs and spurs etc.

If you do not have PN in your hands....I'd be inclined to think your problems are targeted in your spine.

Feet only implies to me:
possibilities:
1) foot structure issues (including compression of nerves)
2) compression of nerves in the spine
3) circulation problems-- do you have cold feet too? color changes?
4) did you take drugs (or are currently taking drugs) implicated in causing neuropathies?
5) Migraines can be due to many things. 15 a month seems like alot to me. There are specialty clinics that deal with chronic headache. In fact chronic use of pain relievers may actually cause headaches...they are now seen as MOH.
This is an example of a tertiary clinic that specializes in chronic pain/head pain and MOH:
http://www.mhni.com/why.aspx#

I have been to 2 of their professional all day long conferences and know first hand how successful, professional, and medically creative and advanced they are.

I have severe longstanding osteoarthritis everywhere too. Alot in the spine. So I know how that can be. Spine, feet, hips, knees, even the jaw. Some is moving into my hands now. I am getting Heberden's nodes on my right hand.

I use very strong magnets for some of my pain. (last night even)
I have a thread on this:
http://neurotalk.psychcentral.com/sh...hlight=magnets

The new very strong magnets are quite good at blocking pain.
I only use one at a time now of these larger plastic coated ones.
These would be a good test for you to try, various locations for the spine and feet.

The head however, that is a much different animal. I can't recommend the magnets for that location at this time. The FDA has approved strong magnetic therapy for resistant depressions, but evidence for safety on the head is not abundant at this time.

That thread has a link to a health site with a diagram of the nerves in the legs/spine and feet. You can use that as a template to put the magnets. That is how I do it.

I don't accept "idiopathic" often. There is typically always a trigger or reason for pain.

Chocolate Lab

"Your Honor Student is Merely a Pawn in My Chocolate Lab's Diabolical World Domination Plot!"

Doc

I'm STILL Idiopathic....
 

Aren't we all?

All the PN causes on that list have been ruled out by a passel of neuros, coupla podiatrists, and my spine guy (ortho).

The chronic headaches (fifteen or more per month for three consecutive months is the criterion for "chronic" with regard to headaches) were thought to be New Persistent Daily Headache, but were later found to be from Chronic Tension Type Headache/Migraine Complex - Sudden Onset stemming from reactivation of the Epstein Barr virus from having Mono as a teen. After several years of searching (and suffering), I found the neuro known as "The Headache Guy" here. He asked me 3 questions and had them pegged. While there is currently no treatment or cure for these conditions (just treating the headaches, and none of the prophylactics worked for me), fortunately they often lessen in frequency over time (i.e. years), which has happened to some extent; they're no longer chronic by definition, but frequent enough... Sometimes they're cervicogenic, sometimes migraine, and sometimes both (what I call "double-whammies") and sometimes they can fool you; you think they're one type and they're actually the other ("foolies"); foolies are the worst because each type is treated with different types of meds, and the meds are virtually useless against the other type.

Magnets don't work for me, and I've run the gammut of "alternative therapies". I use the ones that work for me, and fugetabout the ones that don't....

I'll keep investigating causes for the PN, but when the top PN guy at Strong cuts you loose, you need some pretty respectable citations/studies to get them to go further. Either that or I've got to find the unaffiliated "PN Guy" who has so far eluded me.

Doc

OK, so is it back to square one?
 

Ideopathic to me simply seems that it's too much bother to LOOK for the real problem or problems. Basic causes are inherited, toxic, structural and auto-immune triggered. Thing is? Most docs do NOT want to go into the expensive venues of inherited and auto-immune.
The latter was my cause in my case...A very loong bout of pneumonia a few months before, caught up with me, and set my whole body into a downwards tailspin!
As long as you can move, breathe and have insurance? Get copies of all your prior records [for your files of course-no other doc needs to know who you are going to see!] and use them along with Liza-Jane's worksheets [ http://www.lizajane.org/] regarding tests done or not in relation to your sensibilities. Just bring test results, not any commentary to a new doc for a second opinion and the statement that 'we didn't communicate well'. Leave it at that! The new doc can tell from test results what menu of other tests they'd prefer to do? And they will do them!
This part of the St Louis Univ. testing protocols can also help you decide:
http://neuromuscular.wustl.edu/lab/nvworkup.htm#lab
For me, by the time I was diagnosed, much damage was done..some of it permanent. But, IF I'd not gotten my diagnosis? Likely, I'd be a goner by now.
I agree that some meds can and do help? But, some never eliminate that overall buzz [of pain]... unless they dull the brain as well. With many neuropathies? Straight super class pain killers don't do a THING other than muzzie up that brain so you simply don't care! About anything.
Soo, try and get as much testing and ideally treatments done before we get to the point insurance-wise where we won't be able to get tested or treated! More importantly? DO IT WHILE YOU CAN DO IT!
:hug::hug::hug:'s!!!!!!! - j

very true in my case

A fellow Idiopath
 

Welcome to the idiopath club. I was diagnosed idiopathic polyneuropathy in June of this year. I finally got my records reviewed by a doc in the peripheral nerve center at Johns Hopkins. He said all I can do is manage symptoms. I guess polyneuropathy means we have no idea what's wrong. I haven't had much luck with meds, the ones that work have side effects that are worse than the pain. Cymbalta was working some but the pain is getting worse or Cymbalta has stopped working. My doc put me on Ultram but I'm not sure it is of much help. I'm trying acupuncture also. Only had 5 treatments so far and no improvements. I'll give it 8 - 12 before I make a decision. My mom had chemo induced neuropathy and acupuncture worked wonderfully for her. 2 weeks of treatment and it disappeared.

Glad the Gabb...works for you.

I too was 'diagnosed' Idiotpathic? But, because I kept...
 

at IT while IT progessed? I found here and other sources! Here most kind and valuable!
Honestly? Most docs can and DO change their minds day to day about each of us? I know for a fact that my own docs revise diagnosis according to whatever is being slammed their way that day and how well I'm doing on 'maintanance'! So far? I've counted at least 8 on my neuros' exit sheets!
Hermes? My 'first' and fired neuro kept upping Neurontin to the point where I was having hallucinations! I pointed this out to him? HE THOUGHT I Was CRAZY!.. I CHANGED NEUROS and got back some life!
Thing is? That some docs come into diagnostics with a heap of biases! And often little experiences regarding some auto-immune and hereditary neuropathies.
Also know? That neuropathies,...depending on what their triggers are? Are totallly squirrelley as to how they act/react to many therapies. There can be times when some 'treatments' feel super? And later make you want to crawl out of your skin! As an instance? Mrs D's soaking feet in epsom salts? After five minutes I thought I'd be hanging from the ceiling like a cartoon Garfield! I went up the wall and back down again? But, other of her suggestions about supplements make sense and are practical to take if the overall scheme of things. Heed HER WORDS WELL! She KNOWS PN PAIN and still shares with all of us! Freely and kindly!
Dr Smith? As one who has gone thru multiple immune system 'breakdowns' [For want of better word?]. Things can and do cascade. Not for the better tho unless something is caught early on! In my case? It WAS cancer, and my IVIG treatments for CIDP did help contain that cancer. Cited here:
http://www.ncbi.nlm.nih.gov/pubmed/16391406 It was a very small sample? But on target as I'd been on IVIG for a year before the cancer was detected. AND I'd not been tested for cancers before even tho I'd a strong family history of it. SO BEWARE?
As for your headaches etc? Have scans been done of the head and neck? W/wo contrasts? Etc? This could be KEY in either including or excluding many other neuro or immune issues.
That all said? Remember. We are NOT HOTHOUSE FLOWERS growing in a contained environment. We go out and about into the world when we mite be most vulnerable and not even know it! Doesn't mean we go out w/face masks on. Just at less crowded times of day for 'contact' with possible 'flu' or other sick people. Worst is having to to to an ER!? THERE ARE REALLY SICK FOLKS THERE? AND I truly don't want to 'share' if I can help it!
Hey! We will get thru it! We are smarter and more alert than most, and we know to learn and ask questions before we get killed with benign ignorance!
Go forth and fight! What have you got to lose at this point, besides some co-pays and a lot of effort! The pay-offs could be immense! Hope and faith in yourself now and in the future! :hug::hug::hug:'s - j

The real problem here is that they haven't yet 'invented' all the tests that there are to invent in order to unravel some of these mysteries. So when they say that ALL your tests have come back negative it's because they haven't tested for the right thing/s either because the test doesn't exist yet or because they give up too soon before eliminating all the possibilities!

The reality is that you need to keep your radar on alert for future changes in medical advancement, as the doctors/neurologists you have seen certainly wont chase you to up to tell you about them.

I’ve been recently reading a bit about Sensory Ganglionitis which unfortunately can only really be eliminated as pathophysiology underlying the various forms of neuropathies/polyneuropathies during an autopsy/post-mortem which is a touch too late for us! You may want to look at http://www.medlink.com/medlinkcontent.asp (part article).

Good point.
 

I do like to remind people that a lot of the sophisticated blood tests for autoantibodies to nerve and for certain hereditary neuromuscular conditions have only been developed in the last two-three decades; in 1980 thre were even more people labelled "idiopathic" (at least as a percentage of people with neurologic symptoms--it's a fair question as to whether the incidence of such symptoms has risen, given our diets and the toxins in our environments).

I had to laugh about the final sensory ganglioitis comment--Dr. Abhey Moghekar at Johns Hopkins, who has done a lot of research in that area and who I've corresponded with, did tell me at one point that it was a possible etiology in my case, but we did not yet have the imaging technology to discern the condition of the dorsal root ganglia and that confirmation of such a diagnosis awaited my autopsy. (Typical neurologist humor, which is to say not much of.)

Ahhh Dr. Smith, you are trying to train a chocolate lab?? Heh, heh....

I have one....80# chocolate, then a 'silver' one which is a variation of chocolate, as I understand, 95# think Scooby Doo, then a lovely little yellow lady 'dudley' who is about 60#.....so maybe 200#+ of labrador. They are smart as a whip....snuggly, loyal and wonderful....but, my, my, as trained as mine are, they still do some stupid things. They shed enough fur to cover a 4th labrador every week.

They ate my Viactiv again...yes, they are fine....vet said it won't hurt. Yes, it was put away....mine 'do' door knobs.

Raised a few 'Labs' in my time. Intelligent, but stubborn, single minded- and can act as if you are stupid when giving them commands, :eek: if they don't want to listen.
Also are big 'chewers' when puppies.
I remember coming home to a 'winter wonderland'
in my family room when 2- 5 mo old lab pups decided
to tear apart a foam futon and 2 feather pillows. :cool:
They must've had a ball, and were so excited to see me when
I opened the door.

To Bob's post? All I can....
 

say is: ISN'T TEETHING WONDERFUL???? :D:eek: Nuff Said ...
Who was it here that coined the word: IDIOTPATHIC? Bob, Echoes? Who?? I'm forgetting, BUT? It is soo APT!
:hug::hug::grouphug:' to/with all! - j

And, better a lab doing the destruction than a Russell! Also, once had an always hungry cat who'd chomp on the antiques! Wow?

No, we are training him. :D
He's not our first, so we've been through this movie before. Our last, a black labbie, was a local legend. Sweetest gentlest soul of any creature I have ever known/met, but dumber'n a bag o hammers....

We're fortunate also to have the advice, guidance, & friendship of the best trainer/behavioral consultant in the northeastern US.

Doc

Is it Bob?
 

Is nide44 a Bob?

The sig looks kinda like Bab B on my screen....

Doc

most be your font......nide is indeed Bob

I most certainly AM a .... B O B :cool:!
(Masculine-definitely... and BYOB ;) )
I write about my wife enough, altho today
it doesn't seem to matter what sex a 'wife' (or husband) :confused: is.:eek: