How did you all figure out what kind of PN you actually have? Was it hard to find out?

Also, do you think l would have a better diagnosis of my PN if l visited a special PN clinic in the US?
So far here l am having blood test, urine test and not sure at this stage if l should have a cat scan of my chest and other parts of the body, not sure hwy yet. Did any of you need x-ray or cat scan?
The neurologist said they are very bad for our health and should be avoided.

Sue

Rapidly progressing PNs can be treated with IVIG. The less common types due to increased antibodies thickening the blood are being treated with a very expensive potentially toxic drug:
Rituxan. So if one has one of these PNs getting it identified is important. Autoimmune illness is treated with immune suppressing drugs in some cases. The secondary benefit then can help that type of PN. Controlling blood sugar helps with diabetic PNs. Control the thyroid disease and the PN improves.

I've just been this month to 2 long seminars on the brain, its chemistry and they both included chronic pain.
Yesterday was a topic included called the "solicitous spouse".. which is a term for placing undo attention on pain and daily management. It is a psychological term to explain that when attention is constantly given either by someone outside of you to your pain, or if YOU yourself pays undo attention to it, then the pain becomes a reinforced behavior in the brain, mediated by dopamine, a neurotransmitter that facilitates learning, and ultimately "addiction" type behaviors in some.

This concept is not going to be greeted with open arms by people with chronic pain, IMO... but it is one step to learning how to live with it and perhaps master it. There is alot of research going on now about the brain and chronic pain, and it is only beginning. Medical change is pretty slow when it comes to clinical handling of patients.

Diagnosis then is to find a trigger if possible and remove it.
This takes time, patience, money.

Over use of Xrays can be a problem...but I really think all PNers should get Xrays of the feet done, to see what mechanical issues may be present. There are many things that can go wrong in the feet, that are mechanically based, and not metabolic.

This website I think is just about the best for explaining all the issues that can happen with the feet:
http://www.northcoastfootcare.com/

I learned how to tie my shoes a new way from that site, that really helps my high insteps and prevents my toes from going numb.

it was through electromography/nerve conduction study that i found out i had sensory motor axonal polyneuropathy with demyelination in 2003, a little over 2 years since i first had symptoms. I have had 7 more since, monitoring progressioin in my feet, legs and hands.

No, actually it was pretty easy. I went to a couple of neurologists, who did several batteries of tests, and they concluded my PN is idiopathic. Since it has not progressed any since then, and I have learned what I have about it (which I expect to be ongoing), my priorities have changed a bit.

Sue, there's a vast difference between a standard x-ray and a cat scan, and many/most people don't know this (whereas your neurologist, whose trust you question, does). I did not know it myself when one was done on me in an ER several years ago; if I had, I think I would have refused.

As can be seen from this table:
http://en.wikipedia.org/wiki/Cat_scan#Typical_scan_dose
a chest cat-scan exposes you to 58 times the radiation of a chest x-ray; i.e. it's like getting 58 chest x-rays. There are times when doctors deem the potential diagnostic benefit of a cat-scan outweighs the risk (my sister is going through that now with an abdominal cat-scan), however doctors are becoming less cavalier about ordering them and exposing their patients to that risk. Your neurologist is up on this and I applaud him for it!

Doc

You may be correct, but it sounds like one of those theories concocted by someone who has never had to deal with the problem personally; something we have to deal with all too often.

IME (in discussions), painees fall into two schools of thought which seem to hinge on whether they reach "acceptance" and their interpretation of what that means. Many "authorities" claim an important key to living/coping with pain is in accepting it.

Some of us disagree, and equate acceptance with surrender/acqiescence. I agree with the first paragraph above at face value (without benefit of all the details/depth) because I believe I've been through something similar. But I credit my refusal to accept with motivating me to evolve past that plateau. I have tried to use my anger and frustration to focus on positive goals, which is no easy feat with a degenerative intractable dx.

Others impressions/opinions will vary, because we all view this thing a little differently - whatever gets us through the days & nights.

Doc

i have had regular cat scans, once per year for the last 5 years or so for multiple nodules on my lungs. i just heard about how much more radiation is in a cat scan than an x ray after my last set last may. unfortunately im going to have more in the future because of the medical situation. i wouldnt if i didnt have to.

on a side note, does anyone else get headaches from mri's? ive had numerous mri's between pn testing and numerous herniated discs. ive been getting regular low level headaches the last few years after doing mri's. just wondering.

Psyc major here ...which doesn't mean I'm any smarter than anyone with common sense.

I'm very familiar with the concept of reinforcing pain and they are finding real biochemical links between pain and depression. I come from a "suck it up and get busy and stop complaining'" family that tends to internalize depression and express it in physical symptoms. We've tended to learn to use exercise to 'cure' a lot of ills and it really does work, along with pleasant social interaction, hobbies, meditation, etc.

I think thats a useful strategy for anyone with chronic pain but I can also say from experience that at some point it just may not work anymore. I had pretty much exausted my coping ability by the time I went to the pain clinic and when the PA started taking about needing to learn to accept my disability etc. I wanted to smack the little twerp.

That said, this is a good site for you Sherizan, people here know a lot of tricks and it does help to identify triggers and learn what has worked for other people. And as Mrs D suggested don't get too wrapped up in having PN, have some fun and make some 'happy neurotransmitters' too, that might help as well.

judi

I'll give you an example, that Dr. Brian King PhD gave us yesterday.
It is a dog story... you will appreciate this better. (brain chemistry is a tough subject with much jargon, and chemistry, dopamine, receptors, and brain anatomy).

He has to board his dog when he travels giving the lectures to healthcare groups, like the one I was in yesterday. The fellow who owns the kennel is also a friend, so they share social stories often. This kennel owner took in a dog for a brief stay with a broken leg, all wrapped up, etc. Both owners gave specific directions on how to care for him, and showered this dog with much attention. The dog walked on 3 legs when the owners were present. Once they left the kennel and the dog was on his own, he walked more normally on all 4 legs and behaved very differently and seemed quite normal in fact!
I think the same can be seen in Thunderstorm fear behaviors where pets get lots of attention during the storms and then behave that way all the time when storms come in the owner's presence.

While the lecture was 6 hrs long, I cannot go into all the details of dopamine and positive and negative reinforcement, and all the permutations we heard. But suffice it to say, the more attention a person or animal gets, the more reinforced it is to
repeat the behavior that brought this attention. For us, in the audience it was not just the "spouse" part, but the healthcare part, where some studies are showing that TOO much empathy and solicitiousness on the part of doctors/nurses, etc, the more the patient will exhibit pain and other secondary gain behaviors.
Much of this is unconscious, and not manipulative on the patient's part. It is just how the brain works with learning.

Of course, chronic pain patients tend to be really touchy IMO. So I don't expect any comments about behavior to be received warmly. But the crisis in pain management, includes this factor, as well as addiction, abuse of the systems providing it, and therefore results in some doctors ignoring pain, and not wanting those patients at all. It is a CRISIS on many fronts, on both sides and that is why the problem is so enormous. Some pain patients giving grief to the system, and others not getting proper care because of that. And much of all that is going on in the brain!

This is one paper where "solicitious spouse" was brought up in the context of chronic pain:

http://bja.oxfordjournals.org/content/101/1/25.full.pdf
pg 27

I have found that keeping busy and distracted does indeed help, as does walking as much as possible. I have a complicated and progressive situation which creates pain and weakness in a large proportion of my arms and legs, and limits how much needlework I can do, which was one of my greatest pleasures in life. Despite this, my best days are ones where we get out and walk and when I spend time enmeshed in a project or book, and for the most part the pain is in the background, not a big part of my life. The disability asserts itself most on stairs and hills, or when trying to lift or carry a lot.
I would agree with the ideas about reinforcing pain. I live in a house with mostly oblivious males, so there is little feedback for complaining about hurting. My husband will do anything I need him to do, and he is my constant companion, but he doesn't fuss over me, my children are properly absorbed in thir own lives. I have a schedule for myself that includes the things I have to do and the things that are good for me and the things that I love, and I don't focus on the pain much at all. I take a low dose, 325/ 5 oxycodone once or twice a day in addition to the neurontin. It doen't fully cover the discomfort but it allows me to "get over it" and get on with my responsibilities, like laundry it is indispensable for car rides, something I have always loved, but which are now very painful.
Distraction, exercise, not letting it take over your thoughts and thereby your life, all great advice!