Lately, I have been reading posts and lots of people seem to not know that the 'peripheral' in peripheral neuropathy does NOT refer to the disease being located 'away from the center' of the body. It is not like peripheral vision, or on the periphery of the body. Most information on peripheral neuropathy does describe the disease pretty well.

Peripheral Neuropathy is a misnomer. It is simply the way the medical profession defines NOT the brain or spinal cord. Now, your spinal cord does not directly innervate the tear glands (lacrimal glands), the salivary glands, the esophagus, the stomach, the small intestine or the colon (large intestine). The spine and brain do not directly innervate the heart or blood vessels. The brain and spinal cord do not directly regulate your body temperature. The spine and brain do not directly innervate many or most of the processes our body does automatically. Of course without the brain and spinal cord, nothing works, and with out an autonomic nervous system, with is part of the peripheral nervous system, the brain and spinal cord are useless to make the body work either.

One form of PN, is autonmic neuropathy, otherwise known as 'the silent killer'. It can be divided up into many diseases and called all kinds of diagnoses, such as gastroparesis, anhidrosis, arrhythmia, or achalasia or sicca syndrome, but, these all amount to dysfunction of the autonomic nervous system. It can have a milder form, called dysautonomia, and that can have treatable causes as well, and usually does not result in the kind of disability or threat that autonomic neuropathy does.

Now people seldom just have AN, they have other manifestations, usually starting with distal pain, like people who have PN without AN have. I don't know any one with AN who does not have significant pain and not just distally, but often viscerally, proximally and all over.

Most folks with AN, are usually pretty sick, as they have axonal neuropathy and axons (nerve cells) once dead do not grow back.

Cells that are deymyelinated can recover their myelin. That is one reason that it is important to figure out, if your neuropathy is a CIDP, chronic inflammatory demyelinating polyneuropathy, because, that is treatable. 75% of neuropathy has a cause that can be identified, and usually, in most cases treated. Most of that neuropathy is distal, and won't ever threaten one with loss of function, especially loss of vital function.

Some people get a PN that is self limiting. Toxic PN is usually self limiting (not always, but usually). Nutritional PN is usually self limiting if caught and corrected (not always), and if any of these are demyelinating, the nerve cell can recover. In axonal cases, it can not recover, and hopefully not too many axons are dead.

If you have amyloidosis, it is serious but treatable in many cases, although some treatments are drastic, such as liver transplant, and this is needed to survive, not just to rid the body of pain.

25% is idiopathic and axonal, cause not found, and of that 16% are thought to potentially have Celiac Disease which is treatable, and 42% of that 25% is thought to be hereditary, or untreatable and in some of those cases it is progressive. That covers 58% of idiopathic, and leaves 42% with no identifiable cause. I say idiopathic is axonal as if it is inflammatory, it is caused by inflammation and therefore, usually treated with anti-inflammation drugs. Some of this is distal, confined to the stocking and glove distribution and self limiting, although it can be painful.

Normal bodies twitch, have fasciculations and all kinds of bleeps and blips and because you have PN that does not mean that you have PN where it is twitching or fasciculating. If you are unable to swallow, start graying out passing out, severe unremitting constipation, or have regurgitation, that is reason for concern.

I am not sure if people really didn't understand that specific body parts that get affected by neuropathy are actually deemed PN due to location, for example on the 'periphery' of the body, or if that was a joke. If it was a joke, sorry, I missed the punch line. If it was simply a lack of knowledge, I suggest reading up on PN if that is your diagnosis, because you never know where it is headed.

It is very important for people to recognize that some people have forms of neuropathy that is not treatable and is progressive.

There are some of us, who do not post our issues, as to the uninitiated PNer who believes PN is only 'distal' as in the periphery of the body, may get upset when they hear what PN can do to the 'central' parts of the body, depending on what you consider central. Most people by the time they get to having PN or peripheral neuropathy in the gastrointestinal system, cardiac system, glandular systems etc. are grappling with some severe functional issues, frightening life issues, and not to be under-rated pain. Being unable to swallow, retain your food, get rid of your wastes, pee at will, or not pee accidentally, sweat, walk, balance, see etc. is not the kind of PN that you can will away, exercise away, eat away, and unfortunately requires advanced medical care, and an extreme juggling act.

Because this forum is shared by individuals with identified and treatable, distal and systemic, demyelinating and axonal, self limited and progressive I think it is very important to understand the entire disease and be very sensitive to those who are coping with total body dysfunction.

I appreciate the advice given on all fronts, from nutritional, to exercise, to alternative. However, speaking for myself, I do have to use western medicine, or I won't last long. A lot of meds simply fail to do for me what they do to others, such as anesthesia. Abandoning the all out efforts I make, will result in a vastly limited shelf life for me (and they do involve exercise and alternative). I have to use opiates, or I can't move. If I don't move, I won't incorporate minerals into bone, I won't use gravity to propell food downward, and my life won't be very interesting from a horizontal position, (at least in my household). I have to use meds to manage too low of a BP (tried salt and fluid loading), make my stomach empty, get my colon to work. If it isn't chewable, or liquid, it isn't going more than 6 inches down my esophagus right now, whether I am on opiate or not....the nerves are dead.

I am likely looking at one surgery, if not more....and there is no getting along without assistive devices, that are obvious to others. This kind of PN can bear a resemblance to MS, without a medication to treat it. I am not the only poster dealing with progressive, incurable PN, so I am not feeling sorry for myself. I am darn lucky to be diagnosed at all given what some folks are going thru with their docs. No one gets to this point, without having tried the obvious....at least, I hope not! And THIS IS PN! JUST PN! I do hope that in the future they come up with an answer and stop the nerves from dying, but as for now, it is something new, every few months....and not for my lack of trying.

Some people who come to this forum are in the realm of very systemically sick, some need to know how to cope with distal chronic pain. It is a diverse group. I just hope that every one makes themselves aware of the scope of PN and what is meant by peripheral.

But then again, people only see what they want to see. See video below.

http://www.dothetest.co.uk/

WELL SAID! -j

eloquence be exceeded only by good wishes for some meaningful relief and future progress with your PN struggles.

Alkymst

You touched my heart,yes WELL SAID by a brilliant and strong woman.
Thank you,thank you...Sue

BRAVO! Very well said!

Here Here!!!!!!!

I commend you cyclelops for an absolutely excellent posting – if rather scary. Let me say at the start of this post that I fully accept you suffer more than me.


I myself have in the last year developed some of the symptoms you mention and my doctors (if that is what they deserve to be called) have agreed with MY!! suggestion that I may be suffering from some form of autonomic neuropathy now. That is after 15 years of “diagnosed” idiopathic peripheral neuropathy.


As a result of my age (74) and the way I feel generally – which is dreadful – I have decided to take no further steps to seek treatments. That means no further wasted visits to the doctors or consultants in respect of “treatment” for my neuropathies. I will only go to seek pain relief as and when it becomes even worse than it is now. I have been taking Neurontin (present dose 3600mg) for many years now and it doesn't help one little bit. I can't stop it because the withdrawal symptoms would be sheer h--l. I used to take Oxycontin 40mg but I have been able to stop that because it also did nothing for the pain.


I have excruciating foot pain which limits me to walking a few yards at a time – thank God I can drive to the supermarket to get my food, even if it does take forever. My feet are also completely numb and this numbness is now spreading up my legs. I have all 3 coronary arteries partially blocked (I can't take medication as all the drugs make my feet pain even worse). I have ongoing bowel problems and now major urination problems. My balance is dreadful due to my feet feeling as if they are walking or standing on large pebbles and I have so many attacks of cramp in my feet, ankle, legs and hands (usually late in the day and at night).


Bearing in mind all these problems which have totally destroyed my life I have adopted an attitude of – I really don't care any more. I am not asking anyone to feel sorry for me or for any sympathy. It is just the way life is in my part of the world when one has a disease that no one else has heard of. Even my doctor says I am the only patient he has seen with PN in a career of over 10 years!


The National Health Service in the UK along with most of the private sector certainly see only what they want to see.


Do I sound bitter? I guess I do, but what does it matter? I am 74, suffer from an almost unheard of disease and have just about tried everything going in order to help but with no success. I will soldier on for a while but I know now that all forms of neuropathy – in this country anyway – have negligible available treatments. The best one can hope for (unless it is recognised caught and treated right at the beginning) is a modicum of pain relief.


Tony

Hi Tony:

I feel for you. My husband has had this horrible thing for almost 16 years. His pain was so severe 6 or so years ago, he had to use the Fentanyl patch. It worked very well but it did constipate him. He lived on laxatives at that time. Neurontin did nothing but make him deathly ill. And lyrica did absolutely nothing.

What was a real breakthrough for him was being treated by a chiropractic/neurologist. What a difference. He was diagnosed idiopathic until last year when they said he had CIDP. But honestly, the chiropractic neurologist (the adjustments, using the G5 machine, whatever the guy did), well it was like night and day (his pain level I mean). He went into that office using the patch, and within several months, he was weaned off.

Have you ever been on the Fentanyl patch?

Tony,

I don't think that there is such a thing as one person suffering more than another. The purpose of the posting is that all individuals posting, realize what PN encompases for some people. How greatly diverse the condition is.

Painful feet and inability to ambulate is suffering, no less or no greater then, gastroparesis or loss of hand function. This disease is cruel, unpredictable, and life altering for every one, but for some it is life threatening, and that realization is difficult. It makes heroes out of most folks who get it, sooner or later, whether they intend for it to happen or not.

I think we all get our share of suffering in life, and when we feel we have had enough, life generously awards us more. You don't sound bitter, and I don't regard you as giving up, not at all. With all challenging chronic disease with limited options for treatment and no real cure, I would be dishonest if I said, that your exact thoughts have never crossed my mind. They crossed my mind several times today.

I would not be honest to say, I was never angry. Some days alternate between acceptance and anger, and I think that is the normal course coping with a disease that so alters what one is able to do on a daily basis.

Because the diagnosis of autonomic neuropathy is 'new' to you, there are a few things, that many docs may not know. I first really realized I had AN, when I had a client with it. He didn't know he had it, and I sent him to the cardiologist with his exercise printouts, and the questions to ask, and he came back to me and told me that he was diagnosed with the disease. I knew at that time, something similar was going on with me. Eighteen months later I found out I had it.

You can attain pain control and I wil PM you. First of all, oxycontin is time released, and in a malfunctioning bowel, it will not be in the small intestine at or for the proper period of time. Fast acting medications, such as hydro or oxycodone, taken every 4 to 6 hours are the better choice. Also because you have to control your autonomic functions, a medication that has a short half life, affords you the ability to control things much better. My neuro, who I think is quite good, actually told me I had a point, and agrees this is the best way to deal with pain in AN'rs. So your pain may be better controlled with other, previously unthought of medications and I will PM you on what works for me, as it has been uncharted territory for many docs. It is based in logic and could provide you with pain relief, which is key to having as 'normal' of a life as one can have with this disease.

Finding the cause, is so very frustrating, and in your country, I don't know what they have offered you. I will PM you on what I have had tested, to make sure you are aware of options if you want them. Knowing what in your autonomic system is not performing helps you to anticipate and prevent some problems and misery.

There are a few autonomic neuropathies that are treatable.

Apparently my kind of PN isn't.

AN should not be a hit and miss diagnosis and I hope that the autonomic battery that was available to me has been available to you as well.

If you should feel you sound bitter, stop that thought, as it is OK and normal to be angry...but bitter? That does not desribe you at all. I don't think you are capable of that, at least how I view bitter.

Disappointed, angry, fearful, yes, all normal emotions. Knowing you have had idiopathic PN for 15, it is likely you have suffered from AN for almost that long. I would certainly consider your experience equal to mine and to many other people on this forum. I wonder how many people have AN and have no idea what their suffering stems from.

There are medications and other interventions that do work to control blood pressure issues, and heart rate issues.

There are medications and other interventions that do work to control gastric and bowel issues.

There are some surgeries that treat some of the esophageal issues.

There are adaptive and assistive devices to allow us to live more normal lives. Orthotics to help with pain and mobility.

There are medications for a lot of the misery of AN, and a lot of tips I have found that is my body telling me in a not so obvious way that it has a 'need' that it can't do anymore on its own....now that I have learned the language it now speaks, I can handle many of these issues. Again, I will PM you on the nuances of AN.

You have probably read my posts that 42% of idiopathic PN is hereditary, and most of that is not treatable, so there is no option but to accept the disease and try to make the most of your life, as is.

Everything that is out there to treat AN, has pretty much been brought to my attention or I have found on my own, and I will PM you to share with you what has worked for me, and may, perhaps, assist you in coping with this condition. Honestly, I am not being treated for any PN, only being treated smyptomatically, which also involves managing the autonomic neuropathy as well as the sensory neuropathy. I will make sure you get the benefit of my experience and any wisdom that my specialists have to offer.

It is late here tonight and I took my Ambien and lest I ramble on incoherently for several hours, I will end here and PM you tomorrow.

I respect your eloquent and wise posts, your long and courageous battle with this disease and appreciate your willingness to honestly share how difficult this time is for you. I hope we can be equally as eloquent and wise in our responses.

Tony - reading your post earlier I wish I knew how to articulate to you what Cylclops just so eloquently said - thank you C.....

As Cyclops said -the AN manifestations of this desease cannot be compared to other parts of it - we all suffer in our own way - and I too can say that while I havent given up - I do wonder if I'll be able to attain any semblence of a life where I feel I can make a valuable contribution again... I think one of my toughest issues with this is finding good docs who I both trust and that understand what I'm going thru.... one of the best has been finding members in this group who seem to more and more be sharing their true struggles and all the manifestions - and gives me perspective on what and how others deal.

Of course no one can tell you to not "give up" - but AN symtoms can be helped to a degree - I've been working lately with a dietician and GI doc who understand this condition I have and a couple other docs are finally pretty concerned about this component too -it was a tough fight to get to this point.... we're going thru options - it will be up to me to decide when I dont want to go further with them and which direction for treatment to take.... if you want their recommended diets and meds (a very good motiility medication that works very great for many and is available all over the world except in this country - thus we buy from overseas with doctors blessing, is domperidone), etc please pm me too....

Sending lots of good thoughts and take care.....