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!

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

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.

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.

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.
Sue