Diagnosis of the type of PN?
 

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 :D:D:D...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. :D

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!

HEY, watch your fingers there, lady! :p

Example not really necessary; let's call it what it is - "milking it". Is that "touchy"? :rolleyes:

Veterinarians are keenly aware of it - I know of a couple who tell their animal patients (only half-jokingly) to milk it with their owners to get extra petting/treats. Doctors are already well-aware too, but it begins back with pediatricians. Hey, it's learned patterned behavior reinforced by our mothers/parents. It may be subconscious for a few, but I think most really know deep down when they're doing it. I have advised... more than once on this site that people not act-out their pain/symptoms while in a doctor's presence (office, ER, hospital). This is addressed on quite a few of the sites that come up when I suggest people google: talk doctor pain. I've gotten some disagreement/flack on this point (acting out for doctors) so I'm with you on that one - I'm just not one of the people that does it (exception: domestic partnership, but that goes both ways, and nobody's fooling anyone. :D There's a difference between, "Poor sweet baby" and, "Get off your butt and feed the dog!" which, oddly enough, have actually occured in exactly that order... :rolleyes: )

I don't think I'd be so quick to put all that onus on chronic pain; anyone with any kind of chronic condition/disease is apt to fall into similar patterns. There appears to be an age element as well (second childhood?); it's the end of the world - until BINGO night. Then they're suddenly 20 years younger and a whole lot spryer, and don't get in their way... (...and I know all about adrenalin and something to look forward to...)

There's another end to that spectrum too; those that suck it up so completely because it's deemed "weak" to allow any kind of emotion/vulnerability to be seen/witnessed. That's wrong too, because those people, who really need help, are afraid/ashamed to admit/accept it, even when refusal is further detrimental. They can wind up - too often - as suicides, and that does harm to everyone.

I think we're really talking about another bell curve here.

From everything I've read, seen, and experienced with regard to the crisis in pain management, not to mention many conversations with doctors & nurses, the majority of problems stem from too many bureaucrats playing doctor - or wanting to - plain & simple. The way the system is currently set up (and works) a person would have to be crazy to even try, let alone want, to abuse it; there are too many hoops to jump through, and too much abuse to take - it's not/wouldn't be worth it. It's far easier and less expensive for junkies to get their fix on the streets. The "crisis", along with the majority of addicts & system abusers, can be dealt with very easily - end the war on drugs, and let the doctors practice medicine without interference of government and insurance companies.

This is not a chronic pain patient being "touchy" either; this is the pragmatism of one who has looked at this problem for over thirty years (decades before it affected me personally, from studies in Constitutional law, American & world history, anthropology, and others) and believes it is time to fix the problem - not the blame.

I have yet to meet a chronic pain patient who wouldn't do - or give - anything to be out of the system and productive again.

Doc

mrsD I have long believed in the conception of the "solicitious spouse", although I didn't know what it was called. A long history with a range of medical issues has taught me the danger of paying too much attention to and even looking for symptoms. I used John Sarno's books to pretty wheel get over bad chronic back pain.

I have also seen in friends and family with cancer that will power and thinking alone will only get you so far. With PN one of my strategies is to tune out from the symptoms, a bit like TRT therapy for tinnitus, it won't get rid of the problem but it makes it more livable.

So while I am actively pursuing medical solutions, I'm also using supplements, exercise and a program developed by Jon Kabat-Zinn who is a is Professor of Medicine at the Stress Reduction at the University of Massachusetts Medical School.

The best advice that I got from this forum is to work with the medical profession, but to also "own" and the charge of working with my condition.

I considered not bringing up the topic at all.

It was only a part of my seminar, which included habituation and how habituation is mediated in the brain. People become habituated to food, sugar, gambling, smoking, and other things because of basic reinforcement cues from the brain. Chronic pain is only one example where reinforcement may occur.
Starting off the seminar was an amusing example (this speaker used alot of humor) of a common habituation behavior which he delivered in the punch line=LOVE. We all fall in love at one time or another (hopefully) and this involves habit behavior, need and has a withdrawal, and involves dopamine to some extent. In fact my new kitten, Houdini, is really really attached to Weezie which now, she will roam the house calling for her. Never had a cat do THIS, in 40 yrs of having multiple cats at a time. So it even occurred to me that Houdini has reinforcement needs for her feline PAL. ;) (Houdini is very unusual anyway, and that is why I picked her out...she is very very loving and gentle).

I've controlled my pain issues carefully like RideOn is posting about. I continued to work, and do most activities until I became too old to keep up with the stamina required. My fall and injury to some thigh tendons, was the last straw for me, and it was time for me to retire anyway. Too much stress nowadays in my work, and 13hr days often in a row, standing is just impossible for me now.

I'll also say for the newbies, I've actively pursued many avenues for my pain myself. Various patches, rubs, low level laser, ice, special shoes, magnets, and of course dietary and supplement supports. Focusing on learning about PN, pain, and looking for
ways to live with it, has reduced the pain loop for me, I believe.

We DO have to become master of our own minds and bodies today. It is a learning skill, and people have to understand that results are slow in coming, but will come for many.

That can easily be extrapolated to include anything that brings pleasure/joy.

Likewise, which is why I often couch it in terms of a journey or process. The last few weeks, especially, have been such an improvement as to motivate me further to what more I can accomplish (with regard to coping with pain).

Doc

The reinforcement process in the brain has positive and negative aspects. Negative reinforcement is defined psychologically (and somewhat differently than lay people think), as removal of a painful or noxious state by the behavioral action of the person.

Hence taking an aspirin to relieve a headache is called negative reinforcement in this context.

Much of reinforcement according to the expert I listened to involves less than what we would call "pleasure". Relieving hunger, for example, is just a reduction in some stimulus from our body to eat something. Eating something "decadent" however may cross over to pleasure.

Pain relief, for chronic pain is not going to be "pleasureable" therefore, as it is being done to remove a painful stimulus and not create euphoria or a "high".

This is not to say that some people here on PN should not consider heavy duty opiate therapy for their PN. Some PNs are so painful, there is no quality of life possible past a certain point. Deciding what to do is a personal decision, and if you and your doctor decide heavy duty pain relief is necessary, you will have to do it or at least consider it.

The net is really full of papers on habituation, reinforcement and other psychological investigations on this subject.

For the most part today, the thrust of both seminars I attended was in lifestyle interventions. Obesity and weight gain, being the primary target, and not chronic pain.

Thanks for the articles. Very interesting reading. This makes me wonder if it's worth getting a chest CT scan at all. I am not displaying any chest pains with my PN, or ay other type of pain apart from sore feet and hot hands and sometimes floatiness, so l don't want to put my body through extra risk of anything anymore.

Also the article on pain showed the the mind and how you interpret pain is crucial to leading a happy life. It's seems to be a process most people go through, and being aware is very helpful.

Sue:

At this early stage in your PN... all I would expect from a chest Xray or CTscan is evidence of lung tumors or masses.

What are you expecting to get from this test? Did I miss something?

It's is a generic list of tets attatched to my report, so it's not directed at me personally, he gives it to all patients with PN.
So it's up to me to decide if l get it done or not.

I had my lungs x-rayed a few years back and showed nothing, so not sure if l should bother with a ct scan. Don,t even know what it's for?

Sue

There is a type of PN called paraneoplastic PN.

This comes secondarily to cancers...mostly of the lung.

So a thorough doctor might want to rule out cancer. Some lymphomas will show up in a CAT scan of the chest too.

Sue,

If it were me, I would look at my probability/risks for a lung problem of this sort (cancer) - Anyone in the family had it, smoker, job or other exposure to carcinogens like asbestos, history of other cancer, etc. Then I would have a discussion with the doctor to find out why a catscan vs. x-ray (which I wouldn't be so hesitant about) and if a standard x-ray will suffice. Is he screening for other cancers as well? Is there some blood test result that's raising some suspicion?

What I find curious/puzzling is why a catscan (given what's known about them today and the rarity of this type of PN) would be given as a generic screening(?) but I'm not a doctor. I am curious as to the answer.

(That's 4-5% of patients with cancer - NOT 4-5% of patients with PN)

Doc

Lung cancer used to be rare in younger people. No longer.

Christopher Reeve's wife, was 44 and died of lung cancer a year after he passed away. She was not a smoker. It was a tragic loss of both.

Lymphoma also presents in the chest in some, along the mediastinal lymph nodes, and will show up on CAT scan.
In women the ovary can also be a culprit.
This link shows the mediastinal anatomy:
http://en.wikipedia.org/wiki/Mediastinum

Typically the paraneoplastic symptoms precede diagnosis of the cancer.

I agree that paraneoplastic PN is not one of the more common types. You could forgo the CAT scan in the beginning because other tests may show something instead. Then you can decide later if you want to explore that possibility.

I don,t have any history of lung cancer in my family or anything like that as far as l know.
It's interesting because l close friend of mine, had heavy chest pains, along with sore joints and she had an X-ray on her chest and found something, they then went to a ct scan which they were certain it was hodgkinsons disease. For 3 weeks she was a mess, preparing for chemo. During that time, they did a biopsy from her chest and found she didn't have hodgkinsons, but Sarcordosis. She so happy when the doctor rang of the good news. But we both thought, how could they make such an error of judgment, and how could have they been so certain without a biopsy? What she went through in those 3 weeks was the scariest thing she ever went through. She isn,t thrilled to have Sarcordosis either, but at least it's to cancer. So we are both traveling down these painful days together. Both of us are in our 40's, both with young families and both always watched our health. She is a personal trainer.

As l don,t have any kind of other symptoms except the PN ones, l think maybe l should wait and see what happens. If anything l will do an X-ray first, I really don't want to expose my body to radiation.

I do have a bit of chest pains here and there, but it is very slight, and it could very well all be anxiety related. It could all very well be in my head.

I can't believe Reeves's wife died. Poor children, without parents now.

sue

Pardon me for responding to the thread in reference to a few posts ago. I just wanted to say Mrs D that I think this was a very appropriate topic and hopefully it will be viewed as another tool and not seen as a personal attack. People need to know what role their additudes and behaviors have in addressing pain, it helps. I'd like to see more.

I thought there was a trend towards having fewer ct scans too, I'd also ask Dr why.

judi