Do you have a positive tinel sign?
 

Do you have a positive tinel sign for your tibial nerve:
Here is a picture
http://www.efn.org/~opal/pain.jpg
Tap the read area. If you feel pain or tingling in your feet/toes, it means you are positive.

Edit:

If you vote no, please share if you have numbness in your feet and how much, full, partial etc.

No tinel sign. Variable numbness at the sides of both little toes, and most of the pads under the metatarsal heads. I also have tingling up to both knees, again variable day to day.

I fell for that:p . The not so funny thing is, I do have pain in that area on the outsides of each foot. My feet hurt more than tingle anymore. My toes do go numb at times, not as often as they used to, like I said, I have more pain now. Both feet stay swelled, some days worse than others, but never goes down. They swell the in the middle of my foot, the 2 middle toes wide, and swell almost to my ankle. This started last January and has pretty much stayed swelled. Last week I did inventory of frames and had to stand on my tiptoes some of the time for almost 4 hours and I had pain for days from that.:Sigh:

No Sign
 

Feet, legs up to above knees completely numb - will get tingling in one foot after IVIG..... or if really overtired..... no realization when I get cut on my feet or legs either - which is not good - have to be very careful... (usuually the trail of blood is a sign)

and this means??????:confused:

The reason for this thread is:
http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

"In idiopathic neuropathy, the presence of a positive Tinel sign had a sensitivity of 95%, a specificity of 56%, and a positive predictive value of 93% in identifying patients who would have a good/excellent outcome."
Is the main thing.

Thanks for posting this
 

Optimumeg,
Thanks for putting this up, it will now be an area for the ReBuilder to concentrate on

About 6 weeks ago I had almost no Tinel sign. I would have to hit somewhat hard to illicit a response and currently I get a great tinel sign. There is hope for everyone without a tinel sign at least from my experience. Now, of course in a healthy people you shouldn't get one, but to the injured it is actually a plus. When I had lost the sign my feet were cold and dead numb.

May I ask if your neuropathy is/was due....
 

to an injury? Possibly a traumatic one? Trauma injuries and some forms of resulting numbnesses are common, diagnoses in determining what is or might be short or long term 'temporary' [hate that WORD!] are varied and downright strange.

As one who has had a clear cause-effect Carpal Tunnel issue several years before PN onset... the distinctions in terms of pain levels, pain constants and nerve conduction study results are clear and explicit.
When one acquires an agressive neuropathy, the Nerve studies actually show normal or above normal....AT FIRST. Ironically, should apparent personal perception of nerve function and deterioration occur after such tests, at a time when possible agressive treatment/therapies should be administered-but are not, as diagnostics-to-date do not, warrant extreme treatments...well, by the time diagnostics catch up to the real issues...it's too late! Damage done often irreversibly. Only therapeutics can help. In the meantime...all later tests for adverse effects do occur. The time can be from 1 week to one year, to 10-20 years! In the meantime, PAIN.

Then it's only a band-aid on an open-would type of treatment....UNLESS you can cooperatively and effectively communicate with your doc....in a non-agressive manner. Some are lucky, some not. Depends on the doctors, their people skills and diagnostic skills. LOTS of variables that can help or hinder a diagnosis.

Tinel sign is only ONE aspect in assessing the total picture. ONE piece of the puzzle? Yes. How large a piece is what each of us ask about blood tests, emg's, ncv's, you name it!

IF any had the ANSWER, would we need to be here? Good thoughts always, and pain free minutes, if not more.... - j

My neuropathy? Not sure why I have it.

What about comparisons to ....
 

www.Lizajane.org 's tests? Where do you stand on that?

Any clue? - j

I test perfect on everything that can be tested in my area.

Spreadsheets
 

Hi Optimumeg - sorry - I cant remember - what is your diagnosis? Is it definate? When you say "in your area" does that mean the type of neuropathy that you have??? (sensory, motor, etc etc????)

Remember - you can start out with mild symtoms at first (I did - just numb hand and foot - wheelchair within two years) and progress quickly and if a cause can be determined you are way ahead of the game.... just concerned that your docs may be just sitting back and waiting - and if they arent proactive you'll be the one who pays for it.....

:confused:

I was informed some of the blood tests were non standard and had to be done at places not in my area.
I have peripheral neuropoathy in my hands and feet. Its mainly sensory with some motor.
My doctors are worthless, I know this, they just pawn me off to the next guy and give me painkillers.

It is important to understand that this study does not necessarily apply to most folks with PN. It appears to be a sample of people that the authors accepted for their nerve decompression surgery. This has been and continues to be very controversial. People have posted in various forums who have had a wide range of outcomes. It may be that Dellon et al have identified a marker to better identify those who who would have a better surgical outcome, but of course, there are a lot of other factors involved.

This finding in no way applies to the general population of PN'ers. So, the "excellent outcome" that is referred to applies to surgical outcome - that is all. Also, I would imagine that the subject pool are those candidates who have already been pre-screened and deemed acceptable for their surgical technique.

Now of course, if you are considering this surgery, then it may be relevant. But even then, I would caution that the picture is usually much more complicated than boiling it down to a clear and definite probability statement. Thus, it would be wise to actually read the entire study and have it reviewed by another doctor or someone who can comment sagely.

rafi

I would assume this idea of a tinel sign correlating with a recovery applies to surgery and non surgery. If you have no tinel sign and total numbness, it is probably because the nerve is completely dead and can't transmit anything. That's just my idea though.

I was a Dellon method patient. . .
 

It may be that Dellon et al have identified a marker to better identify those who who would have a better surgical outcome, but of course, there are a lot of other factors involved.

"This finding in no way applies to the general population of PN'ers. So, the "excellent outcome" that is referred to applies to surgical outcome - that is all. Also, I would imagine that the subject pool are those candidates who have already been pre-screened and deemed acceptable for their surgical technique.

Now of course, if you are considering this surgery, then it may be relevant. But even then, I would caution that the picture is usually much more complicated than boiling it down to a clear and definite probability statement. " rafi

Rafi - I agree that perhaps it is only a marker that Dellon has found as I was positive on all his tests and had 4 tarsel tunnel (2 each foot) surgeries done by a Dellon trained podiatrist. 2 1/2 yrs. post surgery I continue to deteriorate, a good sign that the surgeries were not a success! It's too bad for me, left with extreme pain, and too bad for the podiatrist who was the nicest doctor I've ever had and one who would have done anything he could to help me.

nancyh

Optimumeg,
After reading your post yesterday I put the pads from the ReBuilder on the nerve area of both feet and buzzed them for 30 minutes. 4 pm is the time of day when my feet and legs have tightened up and give out for the day and its usually couch time for me. 5 pm is the time for my last Tramadol dose of the day. When I got up to take the meds my feet and legs felt very lite and the movement was fluid like. Pushing it a bit further I went out to the shop to finish up one of many projects laying around, before long 2 hours had passed and the lightness still remained along with an itchiness in the legs. Around 8 pm I tapped on the nerves and found a greater response in the toes as they curled slightly. As I post this, this am my feet are numb in the balls of feet and toe area, the legs are free of any tightness and pain. Will keep this treatment up 3 times a week and see what transpires. As for thought of any surgery no way, I read the plights of too many folks who have been put to the knife. If you have time you might put up a poll on the amount time per week being on these forums and researching PM. Thanks again

It seems from reading your post that applying the rebuilder there helped significantly? Pain and tightness in the legs seemed to disappear and you were able to use your legs/feet longer. Are your feet normally numb? Has the location I mentioned helped you more than other areas? What other areas have you tried?
The location of the tinel sign is where the tibial nerve (which supplies the bottom of the foot) reaches the surface. There is also a peroneal nerve tinel sign location, and I need to find the saphenous and sural nerve spots.

negative on tinel sign
 

My toes and feet are numb to varying degrees and different times. Mostly always blue and COLD when really numb and can warm up for no known reason too.

Aggrivating, so aggrivating. The progress totally stopped. I magically started healing, and now I'm magically not. :(

It Happens....
 

It is to me, a matter of tempering one's hopes and expectations. Just re-program YOUR mindset to a sort of 're-charge' mode. A constant one.

Progress, if any, also has to do with all the other 'things' going on in your life...insurance hassles, basic living activities on a daily basis, families who have NO clue, and heaps of other issues. Ever think that your body and mind have been putting lots of energy and resources into the 'recharge' modes?

It is a matter of FOCUS: on doing good things for your body that help it heal, and you live....PT, eating well [even tho you may not care at ALL], doc's support, family support, ANYONE's support? ON top of all that, keeping sanity?

YOu know? LizaJane's been thru a lot lately, set-backs w/her spine, family issues and here she is....going out to the total BOONIES on what was supposed to be the ultimate 'recovery' adventure! I am betting she will have a good time in spite of the pain. Keep in mind tho, each of us deal with the pain/no pain issue a bit different [maybe because we ARE a bit different?]and cope/compensate/get on with life in adaptive ways. As long as you have and get some internal sense of 'progress', even now and then....well IT IS PROGRESS! and NOT those 'GEE I'mGETTING WORSER?' issues...

I really feel for our docs often, there are no promises, and I wonder/hope/wish that some of 'us' stick in their minds and would work harder for US! It may not be happening now, but I sure hope so, and soon!

I mean...look at Billye [Silverlady] going to the Mayo thru sleet, snow, rain and blizzard for a 'few' days' only to stay more than 'many' days! Look at kmeb, who was diagnosed/misdiagnosed from the get-go. Look at Liza Jane, BobB, Brian, Nancy and Rafi, lastly ME....we all have to face variations on the DEMON each day! Look for all the GOOD things and hold on tight! The rest is/has got to be extraneous to plain old get by!

For now tho, Good things and super thoughts your way! - j

I'm New But I Have A Lot Of Numbness In My Toes And Underneath On The Pads. My Left Leg More So On The Inside Feels Numb When I Touch It About Half Way Up My Leg. I Really Don't Feel Much Of Anything When I Tap That Area. I Have Been Suffering From Pn For Six Years This Month. What An Anniversary To Look Forward To. I'm Disabled On Ssn. I Hate What This Has Done To My Life. I Was Always A Goer And A Doer And Now I Feel Pretty Useless.

How Long Have You Been Using The Rebuilder And Have You Noticed Any Difference? I Think I Saw Something About The Rebuilder A While Back And It Cost About $400.00, Ouch!

ReBuilder
 

Hello Kathleen,
I started using the ReBuilder in March of '06 and it really did wonders for pain control at first, now I use the pads on my back and on nerve locations. I must say for pain control Lyrica and Tramadol has done the most for me. I see you live in Arlington, I left there in the early 70's. 400 bucks is a lot to pay out of pocket, but in all honesty the ReBuilder serves its purpose, they also have a foot creme that I rate up at the top. If you go on medication ask your doctor about Lyrica and Tramadol. Take care and good luck

:confused:This is one time where I dont actually cause any more pain if I touch that part of my foot,my numbness is from the tips of my toes to just under my boobs.But the agonizing pain is only from toe tips up just past my knees,thank god so I dont know if this helps.~~~~~.Liz M.from Oz.:hug:

I just reread this thread and am comforted by the fact that in one year, at least my neuropathy has not progressed. My feet are much the same as last year. Now I do have an official diagnosis, if you can call it that. I have officially been diagnosed with peripheral neuropathy in my hands and wrists with small fiber neuropathy in my legs, feet, and shoulders. I do have cellphone type vibrations in my feet now, and the burning sensations in the balls of my feet, but, I am hoping that is repairing nerves from B12.:)

Still negetive on the tinel sign.

PN can be progressing in other parts of your body, and you have NO clue.

Read up on Autonomic Neuropathy.

PN is a fish net full of all kinds of fish and mammals....things are not what they always appear to be.

I may be confused on this post. Anhow my pain started and for the first many many months of agony was the left inner ankle/foot/calf. I actually had sent my records to that Dillion with no offense I think he is a sales person. He was ready to do tts surgery on me over the phone.He told my mom for him to do the surgery the money would have to be upfront and not through insurance and I sounded like a cadidate and then weeks later I got a follow up if I made a choice. Then my foot/ankle doc who did 2 nerve shots in the tts said how I should not do it and how he went to conferences with dillion and felt he was a sales man too. Maybe I am wrong and he has helped some but I still felt for me it was not good. Also my symptoms have also progressed to different areas being more like rsd possible fibro too. I do have pn as well. My symptoms are up and down and all around. Many times there is no connection to what I have done for ex. It is so frustrating. I have had to change my outlook too. I used to think it was like a broken leg that it goes up hill. My neuro said with nerve pain its like a roller coaster. That is true and I hate it but I hope one day I can get off if you know what I mean.

Tarsel Tunnel Syndrome is controversial and is a red flagged diagnosis for insurance companies.

The jury is out on it. I would not rush to have procedures done....it is best to make sure that the foot is the only problem. Again, AN is a form of PN and folks may often miss the insidious symptoms of AN. There are just so many forms of PN and so many causes, many I am sure, yet unknown.

If the PN stays in the foot as painful as it is, it beats having it set up housekeeping all over the body.

We know so little about the nervous system...I lean towards the least traumatic approach possible.

Well
 

Let's not forget Fanfaire who made that trip through the sleet and rain
had to go back to Mayo through all that again.
Kemb has been through it all,we have gone through,many of the
same things. I had PN before my legs were crushed in a head on collision.
I was near a tiny hospital,with a bad reputation,but I couldn't say
I'll walk 60 miles back to Columbia,because no matter how many people
I asked accept the man,holding my hand on the side of the road would
answer my question ,are my legs still there.

Everything at the hospital didn't work mri's out,e-rays out so on,I was there for hrs. I guess there phones were out,they finally called my mom
very late at night,even though I begged,call my son,we will when the Dr.
gives us permission...I new that ER DR. for years,asked for something for pain,
not yet , finally they made the calls to family. Son said fly her to Unversity
or i'll come and get her. They had a Othopedic Dr.who is no longer one,
I'm yelling get him in here,back comes ER Dr. will you come back to see
him what no,he never came.My mother called my neuro where I live,she called
ER,he said we are going to really dope you up and fly you to the truma center
where old Sue lives. They knocked me out,but took me by amblunce,didn'
let anyone know. So i'm in a wheelchair after years and still lots of PT.
Do I have pain you bet. My middle finger was pushed down in my wrist,
and shattered,lung collapased,and so on.

I take pain meds. and suppliments but it's meditation and a very weird sence of humor...D is right it is like being on a roller coaster for a lot of us,but
I'm hanging on for as long as I can..life is hard but can be so good as well.
:) but sometimes I cry that's a theraputic thing as well..There's a darling
Bobby who writes The world is not made for wheelchairs,it's mot. But
you just do your best,,that's all anyone can do...My hand hurts and so do
your eyes..Polyneuropaths and more. We are different but so much alike.
:hug::hug:Sue

Oh yes I was in pain,teeth crushing pain,screaming pain.What did I do
metal from knees to ancle's have a tarsal tunnel con job. Insurance
paid for it then...But so many done to people in pain and elderly,it
helped to make things so much worth..I can even talk about it. But
please don't even consider it...:mad::mad: Sue and I know I'm the one
who said yes,hope none of you do..

Sue I am so sorry for all you have gone through and still do. You have a good outlook and I try to remind myself to focus on what I can do and try to leave the rest up to what happens. It is so hard as you know. I will say after so many doc apts and so many opinions even docs being negative about other docs or there ideas for treatment it will take a lot for me to do anything invasive. I know things can always be worse and yes there is a chance it could get better from an invasive treatment but its like winning the lotto and my luck sucks. I will say I feel doc prey on people. I have felt like this from inpatient treatment even before the pain. People are volnerable and want help so they can charge crazy fees for hope. Do you know inpatient treatment a day is 1600 a day. This is not the ritz at all. You share a room,crappy food etc. Sorry to get off a little. Even the holistic doc for pain I saw I felt was trying to be a sales person having me buy off his website. I don't know we have more technology now but I feel the care is different. Before you would call after hours and there would be a number to call now 9 out of 10 times it says call 911.

You are so right Cyclelops--PN is in other parts of the body and even if you have a clue, the doc doesn't. I know it's in other parts of my body and they don't believe me. I know it's in, how do I say this--everywhere. I can lay a heating pad on my tummy, and not feel the heat. I get a UTI and I do not feel the pain until it's really bad, the neuropathy masks it so well. Still, the doctors will say, "Why did you wait so long to come in?" I know it's there, but convincing them is another story! I guess it's the small fiber neuropathy--who knows?

My last visit to the neuro, he shoved his fingers into the nerves in my shoulders and says, "Your shoulders are not in good shape!" Well, they have been on fire since that day, especially the right one (last Friday)! Next visit, in April, I may take a ball bat with me. Why would a doctor, who is suppose to know all about nerves, press so hard on a nerve, that he injures it? The nerve is all bunched up now and I have so much pain, laying on a heating pad every night--I am so angry with him!

I used to use heating pads when I was younger, for my aches and pains.
Then my knee dislocated in 1998 and I went to a chiro who explained that HEAT creates more pain, when nerves are involved. She advised me no longer than 10min with heat. Put an ice pack back there instead.
Also if you have a specific point where the pain is give Salonpas patches a try. I have used them on the back many times and they take the pain away for me in a day or two. I wrenched my shoulder trying to fix a bumper on our boat 3 years ago... and Salonpas saved me. Infact I use them EVERYWHERE esp the feet.
http://www.salonpas.us/salonpas.php
This is the version with the active ingredients-- they are not all the same!
You can stack the small ones -- I used 3 for my shoulder. They are not expensive either. Alot of relief for little money.

tHANKS
 

To You Mrs D My 91 Yr Old Aunt Agrees,her Dr. Said Yes To
Them And She Is Very Happy...so Thanks For Yor Advice.
Big Hugs Sue

So she tried them? That's great! I'd be miserable without mine. ;)

Darlind no one touches me now on my extreme areas which are my legs. I learned after 10 docs that it sends me back into vicodin every few hour pain. Even after I went to the internist and she touched another area where I am less sensitive I hurt for days. That is the issue it is one thing to not get any help from a doc but to come out worse is not ok. So now they say I want to touch your legs and I say NO I have had all the tests and repeats done so there is no need. They feel the same as other legs. Most comply now. I will not come out worse from trying to get help anymore.
On that note do people feel no only in there severe areas that other parts are very sensitive. I have become so sensitive my whole body. I lift something even small and my back hurts for days. I wish I could return my body and get a new one. I wish they would stop coming up with new plastic surgery stuff for cosmetic issues and start researching more help for people like us.

Thanks, I will definitely see if I can find these patches!!!! I also will not let him touch my neck and shoulders again!!!!:eek:

Mrs. D, I was interested to read about the Salonpas patches. My husband has polycystic kidney disease and cannot take any anti-inflammatories for muscle/joint aches and pains. I didn't know if the "salicitate" referred to a form of aspirin that might be absorbed into his body?????? I will check with his doctor before I will let him try them, but I was just curious about the absorption.

do ask...
 

It is always a good idea to ask. But there is not much in the patch...just enough to get to the site. I've never had a systemic effect, ie. relief of pain elsewhere with them. And they are small.

When you use a drug orally it gets diluted thru the whole body.
A patch like this will send only a minute amount into the body, while concentrating it locally where the patch is applied. If you apply HEAT like with any patch, you can drive the drug into the blood stream.

The patches work better IMO because when there is inflammation, there is reduced blood circulation too. By using the medication locally you send the med directly to the target, so much less is needed. Some of an orally used drug may never reach the target!

This is why some PTs use dexamethasone in a process called an iontophoresis.
http://www.ptjournal.org/cgi/content/abstract/83/2/161

The principle is similar only much more modest with Salonpas.