Really worried about the future being only 41.
 

Hi again

Is there anyone in here my age or younger?

Does it mean if l have PN younger I will in massive pain at a younger age?

How do you all deal with this?
It all just seems so negative from here.

Sorry but this is very depressing. I am normally a very happy person, but now l am worried and waiting for the sharp pains everyone is talking about.

:(Sue

Not all PN progresses seriously. The inherited types typically do,
but the others can be managed.

If you have a secondary cause-- like impaired glucose utilization, or some food trigger, a nutritional deficiency, or a drug trigger, toxin, autoimmune, thyroid, etc,
you can remove the trigger and stabilize. Fixing the cause often fixes the PN for the most part.

Viral triggers may wear off with time if that is your problem.

You need to be a detective of sorts to enable proper treatment and help your doctor find a cause. That is what this forum is for.

Mine started in my early 30's with numbness in my toes, but actually the earliest symptoms were from childhood when I was impossibly awkward and clumsy. Mine is one of the hereditary neuropathies, and my extremely complicated parentage (adultery) meant that no one made the association between my half sister who wore leg braces and the fact that I couldn't run, skate, play sports, and only learnt to ride a bike with great difficulty. I also wore my shoes out on the sides, which I was punished for. I was made fun of by my family and other kids all those years.
I was afraid to mention the numbness to my doctor because all I knew about neuropathy was that diabetics got it and I was terrified of diabetes. When it reached my ankles in my mid 40's I finally brought it up. By that time my hands were also affected. I developed a severe infection from an unnoticed wound in my foot. The podiatrist who treated it refused to see me again until I had been evaluated by a neurologist. She, (the neurologist), was pretty certain it was CMT, but sent me to Johns Hopkins for second opinion and skin biopsy. I had more blood tests and one of the Athena tests for genetic neuropathies, HNPP, since I have pinched nerves. I decided, together with my neurologists, not to pursue testing.
So mine is slowly progressive and untreatable. I am 50 now. I walk with a hiking pole, and have difficulty driving more than a few miles due to cramping and weakness. I still have 3 of my 5 children at home, and my daughter has a new baby and needs my help. I taught high school English this year for the first time as I have been a stay at home, homeschooling mom all these years. It was a mistake. I am exhausted from getting up so early and dressing up and putting on makeup. I have to carefully plan my day and my resources.
I don't know if this helps. You seem to be in the early stages of being diagnosed. You may well have a treatable cause or one that responds to supplements. You can find workable pain relief, although you may never be totally pain-free. I am on 1800 mg. of gabapentin and low dose oxycodone as needed, which is more often lately, so I may need to switch to a patch or something. If yours is one of the untreatable ones, like mine, they usually progress slowly. Try not to panic. You will get some relief, some answers, and you will learn how to live with the disease if that is your lot. Yoga, stretching, walking, any non-stressful movement is helpful. I would not run until this is fully diagnosed. Any injury on top of your current symptoms will only complicate things. Good luck.

Try to focus on research instead of worry. I like to channel my worry to learning and healing. Finding an integrative MD is good too. They usually know a lot more about healing vs just giving meds like reg. docs. They are MD's so they can give meds, but they are usually very interested in healing and finding the cause.

There are many things you can do. There is also hyperbaric chambers that are used for neuropathy to bring microcirculation to the tiniest of nerves and vessels.

Always keep learning. :)

Thanks so much, but
 

even though it's reality, when l hear stories like Susanne, which l am deeply sorry for her having to suffer like this. It seems like you have it I your genes. I don,t think that is the case for me at all. So hopefully at your age, l will be able to drive and walk normally. Even though it is sad what you are going through, it these kinds of stories l need to out out of my mind in order to try and stay positive and push through this. My mum said to me last night on the phone that people that think about this all the time tend to get worse, and she believes the body has an amazing ability to heal itself. Also, she said not to speak to people who are negative and to not look at this as and end to life. good advice , But it is all still very, very scary of the unknown of what is coming next.
Again, it just seems like everyone that gets NP just gets worse and worse, and it hard to be positive and hopefully when its all terrible suffering.


For me since l have got burning feet nearly just over 9 days ago, the heat has changed to my palms of hands only at night and when l walk my feet hurt. I have muscle twitches last night but the burning has gone. I have been soaking my feet before bed in Epsom salts and taking muti and b1. Still waiting on bd,old tests to come back to see if l am deficient in anything else.

Sue

You have probably already mentioned this, but you aren't on any statins or triglyceride medications, are you? Nothing recent?
And I am just really glad that I was able to take care of my family for so many years before it became limiting. You will be able to too!
Read everything, but don't assume your situation will be just like anyone else's. Everything seems scary in the beginning, but becomes more manageable as knowledge increases and fear decreases.
Incredible knowledge, experience, and patience on this forum.

Non l am not
 

On any kind of meds and never have and never want to be.

Glad you were able to bring up your family, but it is important to enjoy them now as l don,t think your very old at all. Plenty of time still left in life to achieve.

Sue

You need to be reading the posts here daily. Sometimes other people's experience light an idea for you.

We are all volunteers here, and cannot make every post or informational post PERFECT. We do our best, but oftentimes
something comes up in a post, and then one can have a "bingo" moment:icon_idea:. I can recall many visitors here who do not tell "everything" and then one day out comes the salient tidbit that turns them around.

I will hang in there
 

Each day until l figure out how to live my life with this, that is even if l have it.
Will find out more next Wed. It just seems so far away. Would love to know now.

Having muscle muscle twitches today and one has been bugging me all day on and off in the same spot. It is driving me mad.


Sue

Sue, I agree with your mum 110%. It is not good advice; it is excellent advice! As I mentioned previously, stress, worry & fear can exacerbate symptoms, and even create more, including those of a psychogenic nature. (Psychogenic symptoms/disease are every bit as real as organic ones in the physical effects they can have, and are not to be dismissed or treated lightly/disrespectfully.) There is a well documented vicious downward-spiraling cycle of pain, insomnia, & depression, and it sounds to me like you may be heading for it.
Google: "vicious cycle" pain insomnia depression

I've been there, and it can be beaten too.

Everyone who gets PN does NOT get worse (and worse); most prognoses are not that bad:
The earlier people are diagnosed and treated, the better their chances of halting/reversing damage and progression, and you've only had this a very short time compared to most folks.

While I cannot find exact figures at the moment, with many people, PN progresses to a point, and then stops progressing further, or progresses at a very slow rate. Mine has not progressed any further than the soles and front half of my feet, and has actually gotten better, despite being idiopathic (of unknown origin).

The main reason it may seem it's all terrible suffering is that you're on a support group, and support groups (no offense intended to anyone here) tend to be populated by people who have a condition worse than average. The people who are average or above may come for initial information and support, then learn to manage their conditions, and get on with their lives.

There is a "Sticky" thread at the top of this forum: Neuropathy does improve that may shine some light on things for you. But you don't/won't see most success stories either here or anywhere on the web, because people who beat it and/or get on with their lives don't have need of support groups, so they have no need or reason to post or get involved.

Please, listen to your mum on this one. Find ways to distract yourself until you get those results. Get involved in something, spend time with your kids, whatever.

Sincerely, and best wishes, and...

I am only 43 and tend to have the same fears. My neurologist ruled out all underlying causes, and believes it hereditary because my mother had it. I watched my mother suffer for a long time with this and it got worse and worse.

Hello Shezian
 

I am not young now, but I did get sick early in life. I was 29 with my first auto immune problem. Not all conditions progress to be terrible, and truely, there is hope. Much has been done recently in pain control. I have had PN in the same spot for years, and it never got any worse. Try hard not to think that your condition will be worse. I am now 60, and have a good crew of doctors in my corner. I hope you get the very best physicians you can, and that they will give you the treatment you need to feel better. Stick around here too, the support will help you to cope. I am here to listen any time you might need. ginnie

I don't know how long ago that was. I watched my mother suffer with debilitating migraines for decades, but that was in the 1950s-1980s, and about the only thing they had to treat her with back then was phenobarbital; there were no triptans (first introduced after she passed) nor preventative medications to speak of. I seem to have inherited migraines from her, but they are much more treatable with more options.

My point is that while there is no cure for PN now, there are some effective treatments, and while there aren't for everyone, advances in medicine are occuring like other technologies - at an accelerated (algebraic rather than geometric) rate, with many new developments in the pipeline. It may only be years instead of decades or generations until we have better medications & treatments.

Just look how far we've been able to come in the past 15 years (advent of WWW). Before that, we had no way of finding & learning all that we have today, not to mention what we now know about supplements and medications that are helping us.

Doc

Do you happen to know what exactly it was that your mother had? Just curious is all.

Really worried at 41
 

I began living with neuropathy at a much younger age. I learned long ago that it is I who is in charge of my life and my attitude. This has helped me much!

"The longer I live, the more I realize the impact of attitude on life. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do.
It is more important than appearance, giftedness or skill. It will make or break a company ... a church ... a home.

The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past ... we cannot change the fact that people will act in a certain way. We cannot change the inevitable.

The only thing we can do is play on the one string we have, and that is our attitude ... I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you ... we are in charge of our Attitude." - Chuck Swindoll

I was diagnosed with PN when I was 36 a few months later I was diagnosed with Diabetes. I am on gabapentin but it doesnt always help. My PN hasnt gotten worse over the years that I have noticed it has pretty much stayed the same.
I am new to these forums so if I post out of turn please let me know.

Bravo! :I-Agree:

Doc

Dr Smith thanks so much
 

For everything you said. This means so much to me. It's music to my ears.

I agree with you, l need to keep busy, to get my mind of this and stop driving myself mad.
Today we went out for a drive and it was great to get out and I'd something a bit different. Even though this morning l woke up feeling floaty, and kind of out of it a bit, l still tried to remain positive and move on.

Last night for the first time since getting hot feet l slept without having my feet elevated. Slept well, but wake up too early and go to bed too late, and am exhausted, but still more positive today than yesterday.

My mum is great and she gives great advice, and l need to embrace it.
My husband thinks the same as you, and says to me often to panick too much about things on the web. He knows l can get completely anxiouse reading all the information about PN? He thinks l have blown it out of proportion. That l haven,t even been diagnosed yet.

My poor girls haven,t had much a mum lately as my mind is only on PN.

But after reading what you wrote, l am now going to move on with more hope and positivity and go back to being present with my girls. I am so glad to hear yours hasn't progressed. You have no idea how good it is to hear this.

Can l just ask you how long have you had it?

Also, just your opion, do you think it is safe me to have 1-2 wines tomorrow for my birthday? Do you think l will damage more nerves?

Thanks so much, l really appreciate your views which have made me feel so much better.:)

Glad to hear everyone
 

Else's stories and thoughts you have no idea how much this means to me. Especially the ones where they have found the cause and haven't progressed.

Also, l have always done mediation to calm my mind but in this past week l just couldn't do it. Need to go back to it, to calm my busy mind.

Sue:)

Hi Sue, I hope you have a great birthday. I think I'm in a similar place to you, and it sounds like most people go through a phase of being overwhelmed. It really is hard to calm down and it becomes a vicious cycle of tiredness and worry. Like you I haven't even been diagnosed, although my symptoms have been arund for quite a while.

If you are looking for a positive story have a look at the post by Wing42 about "Reversal or improvement of your PN!! (success story's)" towards the end of the page, I can't post a link because I haven't made enough posts.

I'm sure a glass of wine/champers won't hurt especially if it helps you to relax.

I'm curious are you in WA, as I'm looking for a neuro and haven't had much luck

Best wishes for your birthday

Hi Ride On

Its very normal l guess to have anxiety over something like this initially as the future seems very unknown and overwhelming, especially when most of what l read is terribly painful. But as l am doing more research and thankfully for this site, l am realising that the future may not be as bad as l once thought. I need to think positive and speak to people who have recovered, or at the least are not getting progressively worse. Horror stories are everywhere and l need to keep away from that if l am going to survive the initial phase of diagnosis and get my head in order.

I definitely need to calm down.
What about yourself. When do you get diagnosed and what are your symptoms. Do you think its from alcohol? And you don't have to answer this, but what is your age?

I am not in WA, but have moved to Noosa a year ago from Geelong.

The Neuro, l am seeing here is Doctor Schapel. I see him on Wed.
I went to see him last year after l suffered some dizziness and weird other symptoms, he said, because l had migraines in my early teens that this dizziness is a migraine in a different form. Even though l don't' many headaches now, and you don't need to have any headaches to have a migraine. Dizziness is just another symptom of a migraine. But now l must admit l am starting to have second thoughts about if its actually migraine or connected to NP. He recommended for me to take 400mg of B2 for 2 weeks and then cut it down gradually. He said to forget everything else, as it can do more harm than good. So l did have the b2 and it definitely helped. It calmed me down, and also treated most of the symptoms. I couldn't believe a single vitamin could do that. I now take b2 when l am feeling this dizziness coming and also now through this also taking normal b1 until l see him, then l will order the other b1 from the net as you can't get it here in Australia.

I have decided l will have 2 glasses of bubbles tomorrow and l will not worry about anything, just try and enjoy my birthday with my family.
But l will not have more than that, as l have been drinking too much in my life and definitely need to cut down, and having this has been a wake up call, l just hope its not too late. Too much partying is fun, but it takes a toll on me now, l am not a spring chicken anymore. Its weird because in my mind, l am still the same young me, but obviously my body thinks otherwise.

Sue:)

Sue, you sound much calmer. mrsD gave me some great advice in my hyper vigilant thread. Glad that you're going to enjoy your birthday :)

Der Rahrah
 

Glad to have you at Neuro Talk. I hope you can find some information here to help with PN. If you are at a standstill with your physicians, and not getting the help you need, I would go ahead and ask for a referral to another specialist. There is more than one medication that you can try to help ease the symptoms. I was young too, when I got an auto immune disease. Just 29. I was in a trail in a teaching hospital for many years. I know what it is like to be young with troubles. Try to keep a good outlook, and have hope that something more can be done for you. I don't give up on anything, until I get the best possible outcome for my conditions. I do wish you all the best. You can respond in any formun. Please feel at home here. Again welcome to Neruo Talk. ginnie

B1 is not the same as Benfotiamine. Benfotiamine is B1 that is water and fat soluble, very good.

Hi Sue,

I'm going on about 3 years with PN. It began in my toes, one foot slightly worse than the other (felt like I was walking around with tissue bunched up under my toes :crazy: ) and progressed to where it is now within about 3-6 months, and stopped progressing, but I've cut out things that aggravate it, take supplements that help, and try to keep up with the memos (reading/learning, trying new things). I gave up on neurologists after 3 of them gave up on me, and I've been doing better ever since.

Sue, I have no idea. I don't know exactly what you feel (symptom-wise) but more importantly, you haven't gotten ANY tests/answers from your doctors yet.

However, if it were me, I'd put that bottle in the fridge until I knew something definite, and got my doctor's answer. We're not talking about very long. It'll still be there, and if things go well, there may be all the more reason for celebration. And... y'know... :Birthday: (Happy B-Day!)

Doc

She was also diagnosed with peripheral neuropathy. I just remember from her 40s on she just suffered with pain in her feet and how cold would make it worse. It got worse as she aged, and died 2 years ago at the age of 80. I'm scared that I will suffer like she did since I have it also.

With cold making it worse, I'd wonder if you should have tests for cryoglobulins. Or MGUS. These are antibody proteins that thicken the blood. It can be inherited, but is not like Charcot Marie Tooth inherited types of PN.

Dear Mrs.D,
Before I have my PN symptoms, I always feel cold when everybody around me are not. Everytime I mention this to my primary care physician, she would say its probably my thyroid. I sort of accepted it.

Since I have the PN symptoms, I constantly feel this coldness in my body. Actually, to be more precise, its in the part of my skin where the prickly sensation is felt most. I would feel cold when I yawn (which is very often), when i touch a metal or water AND when I feel cold its more intense because goose bumps will appear in the skin where I feel prickly the most. Although this sensation would only last a few seconds but it happens very, very often (perhaps every 15 mins or less, specially last winter) and the feeling of coldness/goosebumps is uncomfortable. I thought this could be just because of the hypersensitive skin. But now that you mentioned about MGUS, is my "cold sensation" similar to the kind of "cold" you were referring to?

Thank you, as always.:hug:

Do you think living in a warmer climate would help with NP symptoms?

Sue

I think the cold from MGUS or cryoglobulinemia is PAINFUL...like frostbite.

The cold from hypothyroid at least for me, is a deep cold, which leads me to making hot tea etc or soup.

PNers here typically cannot stand heat...and prefer cooler temps. We typically stick our feet out from under blankets etc.

When the heat sensing nerves are affected and over work, burning is often the result, and cooling off the area with Biofreeze or a cold pack helps.

The people with the increased viscosity of the blood however, seem to like warmer temperatures.

My feet will become uncomfortable at around 85 degrees.

PN is a mixed bag depending on your particular case. Over 100 types of PN you know!

Does either the cold from MGUS or hypothyroid last long or is it only for few seconds and then will come back again (like a cycle)? The sensation when i have that goose bumps that accompany the cold sensation is uncomfortable but not like the frostbite.

Now that the temperature is getting warmer (at least here in Florida), when the sun hits my skin, particularly the area where the prickly sensation is the most, its very uncomfortable. The good thing about getting warmer is I dont use thick clothes which is good for my skin. Anything less touching my skin is better for me. It gives me the feeling of I am getting healed :D.

Talking about tea, I never read anything about tea in this forum. I am a tea drinker for as long as I could remember (no coffee). I limit myself to green tea (decaf). I hope there is nothing in the tea that is bad for the PN.:winky:

your not alone, i am 30 and mine started shortly after my son was born 9 years ago, i am in the process of going through tons of tests to see what else is going on and why im having so much pain and why they cant just figure it out. Its really hard sometimes to be happy and positive about it all but i keep telling myself things will get better and im sure they will for you also. Keep your head up :)

PN that comes after a pregnancy should be evaluated for
low thyroid. That is what happened to me.

Also low essential fatty acids in the diet, will rob the mother, so the baby's brain can develop. If you do not eat EFAs in your diet (fatty fish like salmon, flaxoil etc) you might be low and when low
you cannot repair your nervous system. Omega-3s are often lacking in the American diet, so you might need to take supplements to get them.

Here is my EFA thread:
http://neurotalk.psychcentral.com/thread6092.html

Warmer than what? :rolleyes: My feet used to burn when they got cold; they used to burn when they got hot. :Dunno: They're still more sensitive to both extremes.

I think this is something you'll need to find out & decide for yourself, because this thing hits different people in different ways. You might start paying attention to humidity and barometric pressure as well. If you can't catch your local weather report, there are plenty of online sites (and desktop widgets) that can give you that info at a glance. Some even have things like allergy and arthritis indices. More stuff to include in a pain journal (if relevant)

Doc

about warmer climates
 

Each person is different with regards to pain. I moved to Fla. in 95. Most of it was to get in a warmer climate (boy did I get what I asked for). All in all this weather does alot for my immune system and pain in general. I would not go back for all the tea in China. Grew up near chicago, raised my family in Missouri. Took care of my mother down this way. A move is a big deal, and you have to figure out if the heat will help you. ginnie

100 types of PN?? Wow. How l am ever going to be diagnosed? So many to choose from. Will they find out where it's coming from? I really, really hope so. Then at least l can work on healing myself instead of being stuck with this.
My husband said yesterday, that we will not give up till we find out why l would have PN? Not even sure l have it, but it sure looks that way. Even though it can be something else.

On Wed l see the neuro, l just have this feeling his going to play it down, like it's no big deal and send me on a couple of tests and say, they don,t know why l have it and that's it. Well, where does that leave me? It's just to easy for them to brush it off like it isn,t a big deal, because for me it is. They see so many patients and it just feels like we are another number to them.
I really hope this isn,t going to be the case. Last time l saw him he told me, to seek mental help and to go on med for anxiety. Has he ever thought that the reason l am anxious is because nobody could tell me what is going on with me?
Dizzy everyday ( back then) would make anyone go anxious.

Sue

SUE, I don't know much about PN but I do know, as a lot of comments on this site also suggest, that worry and anxiety can make things worse. This has certainly been the case for me.

I thought MrsD comments were really helpful I am really working on my ANTs at present. One of the things I have picked up is that the people who take the bull by the horns and get proactive seem to have much better results. Between my bouts of worry and anxiety I am already seeing this as an opportunity to improve my life, but being proactive and positive is easier said than done.
It's probably a case of working with what I've got rather than trying to fix it.

Sounds like you have a very supportive husband. I hope you had a good birthday.

If they figure that out from the testing, or get a clue, that won't be an issue.

With about (depending on who you ask) about 30% - 40% of PN patients.
For many people, it may not be as big a deal as other things; it's a matter of perspective, attitude, and different for everyone. For many, it's more of an inconvenience or nuisance. Not all patients get all symptoms, and not all have pain. But those folks may not need support groups, so you may not meet or hear about them.

Finding clues to a cause is another reason for keeping a journal, and getting/keeping all medical records, test results, & reports. Some people have found the Liza Jane charts & spreadsheets helpful in organizing & tracking tests, and determining which ones to ask for depending on results of previous tests. You can find them at http://www.lizajane.org/

I think it's important to be aware though, that except in a few cases where certain specific causes are determined, treatment is usually pretty much the same - treating the symptoms. The same applies to many causes that are found.

What you described is pretty much how I was treated by a couple neurologists (one was the leading PN guy in the area, at a major medical center); they told me they couldn't find anything specific - that I was idiopathic, offered me a prescription for gabapentin, and told me I could check back in a year (if I wanted to) but there was nothing more they could do for me.

I got similar treatment several years ago when I got IBS (initially dxed as Crohn's Disease). They sent me on my way, saying almost exactly the same thing. I did my own research then, found a treatment that worked, and I've been fine ever since.

So this time I did the same thing; I got online, did a lot of reading & research (which is still ongoing) and I'm getting better (albeit more slowly).

Finding a cause would be nice, but I'm not going obsess over it or make myself worse, or drive my family nuts, stressing over it. I would rather spend the time & effort finding things that help, and enjoying life as best I can.

I'm still looking into & trying things, and keeping notes in my journal. I think that's why many of us are here, sharing what we've learned, our experiences, and if not getting better, trying to halt/slow the progress.

Doc

Also... the very basic tennants of pain.... involve stopping whatever is causing it.

Our nervous system's perceptive job is to signal that something is wrong. The fragile nerve endings are supposed to tell you that an injury is happening.

With much of PN, some injuries may be chemical and not visible to the naked eye.

Having an exterminator come to your building and spray a potent chemical to eradicate insects, may react with YOU and set off the warning system. Consuming certain drugs or foods, may do the same.

It is like a car alarm, may set off with a light touch to the car, by a dog or cat, or the wind, or a bird landing on it, and set off the alarm, when no human is stealing it in fact.

Our nerve endings are an alarm system, to say--- we do not like "this" (whatever "this" is).

Because the peripheral nervous system has to be sensitive to signal us to stop what is causing it to go off, there can be many triggers. Pain can come from an injury, accident, surgery and those are visibly apparent. We see and understand it. With chemical injuries, or infectious ones, we cannot see it happening with our eyes, and therefore only the pain can be the signal. And with the complexity that humans now live with, the environment is so complicated, that we have to figure out what is going on. You don't get training in school in how to read your own body. Often you don't get other training you might need too, like parenting a new baby, how to find a job, how to be a supportive spouse. If we are lucky our family network is positive and provides this "training". But having a condition like PN is a shot out of the blue, that we don't have training for and therefore don't know where to look to fix it.

Doctors have always suspected things they cannot see, as either mythical or psychological, so when you go to them, they have little empathy for helping. Doctors cannot see pain, unless there is trauma or swelling to indicate it. So they tend to minimize it, and think it is imaginary or evoked for a sympathetic response. Back in history, doctors did not know bacteria existed, and thought "bad air" caused malaria, or plague. In history some disease was at times looked at as a punishment from God. If you read any medical history books you'll see examples of the evolution of "medicine" and that attitudes are still taught to students in medical school. They are for now our "modern" attitudes, but say in 50 yrs we'll look back on today and roll our eyes, and say "I can't believe they did that back then"!

So the bottom line is that where medicine is still not well along in effectiveness, we as patients are left to fend for ourselves. With education, computers, books, and other skills, we can do some things ourselves. Learning how your body works, is a skill you can learn, to help yourself in many ways. But to expect a doctor to give a pill after making a pronouncement as to what the cause of a sneaky thing like PN is ...is just not here yet.
We think that taking a pill, like for headache, or antibiotic for an infection, is how PN is going to be treated. And it just isn't so.
IVIG and similar strong IV meds, remain the only treatment for certain types of PN which is not the common majority. For the rest of us, finding tricks to reduce pain, or to remove a chemical trigger, or help a metabolic chemical error like diabetes, is all we have.

Many neurologists don't really put forth effort for sensory PNs.
They figure if you can walk and talk normally, you are lucky.
They cannot feel YOUR discomfort or measure it, and therefore it is not real to THEM. It is very frustrating and really, it is the exception here and not the rule to have a doctor who will go that extra mile and really do a good job with PN. Some people do come here who have good doctors, but many find little relief from doctors at all.

Not disagreeing at all - just playing "pundit"
 

Amen. ...And that's the short list. When I started high school, there was a course taught in senior year called, "Civics" which in addition to the theoretical and practical aspects of citizenship, also dabbled in ethics, philosophy, civil & Constitutional rights, and political (governmental) theory. By my junior year, the course had been dropped from the curriculum, ostensibly for budgetary reasons. Needless to say I was both disappointed and outraged; it was one course in school I was actually looking forward to as containing real-life practical knowledge. Basic economics (as opposed to "home economics") was another class/course dropped from the curriculum and lost forever. I had one particular teacher in another subject who was called on the carpet (and ultimately dismissed) for teaching practical life skills (like decision-making, respect for women, & critical thinking, for crying outloud) beyond the scope of the syllabus. I learned more practical and valuable lessons about life and living from that guy than from all my other teachers combined. IMO, he deserved an award. I could go on....

Like... Oh, I don't know... AIDS?

Like Arizona just passing a law defining life begins two weeks BEFORE pregnancy...

I have a few 19th century medical & veterinary books. They used to be great fun to read aloud at parties after people had loosened up a bit... We even made a board/parlor game out of it.
A couple of examples that stuck in my mind:
Treatment for lead poisoning - mercury
Treatment for mercury poisoning - lead

I don't blame the doctors entirely; I think many feel as helpless as their patients in not being able to help/do more, and professional stoicism prevents many from expressing empathy. (Witness: Dr. Rob's blog entry) I also believe their tried & true system, which held up for over a century, and which they fiercely defend, is due for review & overhaul. (If it ain't broke, don't fix it. But it's running like a Model T on 2 cylinders, and they won't even take it to a mechanic [Lean 6σ, etc.] to see if anything can be done.) Rather than seeing any concerted effort there, I see more of an evolution, which is of course slower, and takes much longer than anyone would like. Changing the attitudes of an entire culture is known to take at least a generation. Given the conservative nature of the medical citadel, it may take even longer.

Doc