[Hladna]

I read the thread on one foot hurts more but I need to ask this: I am in process of having my PN tested etc and so far it has been a hand-issue rather than a foot-issue. But now one foot hurts and I don't know if it is PN or something else.

Do these symptoms match up to PN: Not counting my big toe, it started with my two middle toes feeling sorta numb and achy, then there was an aching pain in the ball of the foot at the point right under where they were. Now it has gotten to the point of the toe next to the big toe feeling the same way, and the arch of the foot is starting to ache.

I wear comfortable shoes with lots of room, and go stockingfoot in the house. The other foot doesn't feel this way.

I guess I'm doubtful that it's PN because my hand-issue started with searing pain whereas this is more of an achy-numby-always-want-to-rub-my-foot issue.

I'm shying away from talking to my doctor because I don't want to seem like a hypochondriac (sp?). If he thinks I am then he may not pay attention whenever I do manage to bring up something important. Plus, considering that we get about 37 seconds in the office...

I said in my Hello that I have alot of questions. If this is a particularly dumb one, I apologize.

Hladna

[MelodyL]

Hi there.

Wecome. Does your doctor know about your hand issue?? Have you ever been tested (for example, emgs?? nerve conduction tests, ANY TESTS AT ALL ON YOUR HANDS??? OR ANYPLACE ELSE??)

By the way, do you have diabetes???

Don't know if you have PN but lots of stuff can cause PN and they try and rule out stuff first.

Melody

[Hladna]

Thank you for responding.

My diagnosis is still in process, although my doctor says the symptoms are classic PN. After the initial consultation and checkup, I had bloodwork which supposedly indicated that I was okay in that respect (no diabetes etc.). I am scheduled for my EMG on June 1 for the hand-issue. Meanwhile taking Neurontin that holds off the major attacks but not the daily pain.

The glucose part of the fasting blood work was an "89". I have no idea if that's good or bad...? Should he have done a glucose intolerance test as well? An uncle and two grandparents had diabetes but parents and siblings are okay. I can't tell if he did a Thyroid thing: what do you look for on the test results? (I have a copy)

As far as the foot-issue, it has been developing only lately, months after the hand-issue and with different symptoms. That's why I'm not sure if it's PN.

To be honest with you, I'm really struggling with fear right now. Does PN spread? Will it go from my hands to my feet? I remember reading on the internet one lady doctor that swore up and down that it *only* starts in the feet. Well, gee, what portion of the population do I respresent?

Sorry to be so nebulous, but this saga is only in the beginning stages for me and I don't know what to say about things.

Hladna

[shiney sue]

Could you tell us the test results of any tests,maybe we will be
able to help better. PN is sneaky and you can do it now or wait
to other tests come in. Have you read the PN posts. Sue

[cyclelops]

The link posted at the end of this post is a reputable link that will explain just the basics of peripheral neuropathy to you.

To understand peripheral neuropathy, you must learn a bit about the anatomy of the nervous system.

Bascially there is the central nervous system, the brain and spine, and then the rest, the 'peripheral nervous system". There are many different types of peripheral neuropathies, from genetic, to metabolic, to autoimmune to 'idiopathic' which means they do not know why you have it yet...it means 'unexplained' There are hundreds of causes of PN.

You can have PN in your sensory, autonomic or motor neurons.

If and how is progresses depends, generally on the reason or etiology.

'Autonomic' causes dysfunction in the 'automatic' systems of your body, heart rate, blood pressure, gastrointestinal system, bladder, sexual function, temperature control, sleep. This can cause some serious problems in how your body functions. It is the more rare kind.

'Sensory' neuropathy causes all kind of parasthesias, or odd feelings including, 'no feeling', numbness, severe pain of all types, burning, stabbing, aching etc. No one person feels pain or parathesias the same way, but we often describe them with the same words for lack of the vocabulary to describe what we feel. This is more common in PNers. It can be very bothersome to very painful, to just plain 'weird, funky, and indescribable." It can cause problems when a PNer doesn't feel pain, let's say in their feet, and they don't feel bad sores that might develop. It can cause balance problems, so can automonic neuropathy.

'Motor' neuropathies affect movement. Sensory neuropathy affects this too, as sensory neuropathy affects proprioception, and that affects how our bodies sense position and movement.

Small fiber neuropathy is best diagnosed by having epidermal biopsies taken at 4 sites and analyzed for nerve fiber content. EMGs are often normal on people who have PN, even very severe PN. Small fibers are mostly unmyelinated nerves, that is they do not have a myelin sheath, or have minimal myelin sheaths. Multiple sclerosis is a disease of the myelin sheath of the nerve, unlike small fiber neuropathy, which is a deterioration of the actual small fiber neuron. There are several ways the neurons degenerate, as well...you will see words like 'Wallerian' and 'dying back' of nerves. Biopsies help to determine what kind of phenomenon is going on with your nerves.

Peripheral Neuropathy is, in itself not really a disease but a condition usually the result of some other disease, such as diabetes, autoimmune disease such as Sjogren's, rheumatiod arthritic, systemic lupus erythematosis, amyloidosis, celiac disease, hereditary conditions such as hereditary sensory neuropathy I, II, III IV and others (probably dozens) yet to be discovered, but will probably be discovered soon due to the mapping of the human genome.

Peripheral Neuropathy can result from some medications used to treat diseases, such as cancer treatments, and can also be the result of radiation treatment, or acquired trauma of some type that just starts the process. "Idiopathic" a term you will see some us use, is a 'diagnosis', that means, so far, they have been unable to determine the cause of the neuropathy. It sometimes takes a while for the etiology to manifest enough to determine the cause. Some one with 'idiopathic' may get a different diagnosis later in time, perhaps they get diagnosed with amyloidosis or systemic lupus later.

There are few doctors that will give any patients with PN any real prognosis, unless they have a specific cause for the PN, and then the prognosis relates to the disease causing the PN. PN can stop completely. Some hereditary PN can only manifest at a certain age, some progress, some don't. Sometimes PN can be arrested with medications. In diabetes, good diabetic control can sometimes stop the spread or minimize it.

The doctors work to find a cause of the PN, and they work to treat the symptoms of PN.

Below is just one link. Other members will supply you with all kinds of links, most of them very useful. One member LizaJane has a list of test used to assist with finding a reason for your PN.

Finding medications to treat the symptoms of PN is usually trial and error, what works great for one person may be disasterous for others....we all have our own journey with finding meds to help symtoms. That can be frustrating. Hopefully you can find a medication that works to help you with your symptoms.

PN is a chronic condition, although it is shocking to get a diagnosis, once you get over the shock of the diagnosis, you get busy working with your docs to find a reason and a management plan. It takes a while to get answers. In the mean time, you can educate yourself with a lot of good online resources.

You will find lots of support here.


http://www.ninds.nih.gov/disorders/p...neuropathy.htm

[glenntaj]

--the Liza Jane spreadsheets available at www.lizajane.org.

This is probably the most comprehensive listing of tests for neuropathic symptomology yet devised, and it functions not only as a alisting but as a tracking chart over time.

Regarding the diabetic possibility, testing of fasting blood sugar and hemoglobin A1c is not enough--many people show impaired glucose tolerance only reactively, so it is a good idea to get at least a three-hour glucose tolerance test with readings taken every half-hour. (I also recommend they be done with concurrent insulin levels, to see the rise/fall of glucose in response to insulin production and how much insulin is needed to cause the various shifts--good way to determine insulin resistance/metabolic syndrome).

It has become increasingly recognized that many can show signs of neuropathy before being diagnosed with frank diabetes, even at levels of "only" impaired tolerance:

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/q...d_AbstractPlus

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

http://care.diabetesjournals.org/cgi...full/24/8/1448

http://www.jabfm.org/cgi/reprint/17/2/127.pdf


I could go on, but you get the idea.

The most "classic" presentation of neuropathy is for is to show up in feet first, due to the "die back" phenomenon of the nerves farthest from the center of the body to be preferentially affected, but this is not characterisitc of all neuropathies. (It is more characteristic of those with ischemic/vascular components--circulation is most easily compromisable in the areas farthest form the heart.) One can get an initial set of symptoms anywhere, and the progression is variable as well.

Investigations into causes of neuropathy--indeed, causes of any neural symptoms--can be long and expensive. Many symptoms of the peripheral symptoms can be exactly mimicked by those of the central nervous system, and it can take a lot of process of elimination to tease these out (if they even can be teased out).

I would start by making sure I recieved ALL test results to this point (always keep your own copies) and compare them to the spreadsheets--see what your values are, and what tests might make sense to add.

[daniella]

I have had so many changing symptoms and felt like hypocondriac too but it actually made the docs able to put more pieces together. I for 3 months had only left inner ankle/foot pain that was so horrid and still but then my right started in similar but not nearly as bad. Sometimes tingling/numb in my lft arm. The right leg and left arm has been for only a few weeks. The neuro said pn usually starts in one area but can move but usually worse in a certain area. I would voice your concern as its better to be safe and catch it earlier.I understand the fear as I have anxiety of whats going to happen next. I know this is easier said then done but I try to stay in the moment and day. So when the thoughts of fear come I say that or reach out for support. Take care

[Hladna]

This is a great group!

Sue - yes, I've been trying to read everything I can get my hands on, not only for information but it sorta helps with the fear part. Somehow knowing about this adds just that smidgen of control that the pain isn't this monster and I'm still myself.

Cyclelops - I am humbled by so much time that you spent answering me, and so much information. I read it all and will keep it all in mind as I receive more info (maybe...) from my doctor.

glenntaj - I read all the articles you posted, and then some on the same site as the first few, and am really wondering about this glucose tolerance relative to myself. I think the dr. didn't think I was diabetic just by looking! I am not overweight and present no symptoms of classic diabetes so "nah, she's not diabetic". Then my blood test reading came back 89, so that's that. I will ask him about the test next time I see him.

daniella - thank you, the support from this group is amazing. The wondering about "where next?" can really get to a person. I'm trying to do as you say and live for today but one thing that's really on my mind is that I'm trying to work on my PhD dissertation right now and boy, this PN really messes with the concentration!

Anyway, thanks to all and to those who answered before you guys.

Hladna

[LizaJane]

Just one point to add, Hladna, when so much has already been said. We can help you best if you can write a brief outline of your health and your symptoms--when they began and how they developed, as well as your results from tests. Please make sure every time you leave a doctor's office, or a radiology or other diagnostics place, that you ask for copies of ALL results or films. Then the best thing for you to do is keep them in a spreadsheet. That way YOU own them, and anytime you decide to see a new doctor, you can bring them wtih you.

And if you post your history to us, in a short format, with the tests (The labs can be uploaded to lizajane.org and then we can see them through a link.--for instance, here's a link to my thyroid test results, just so you can see:
http://www.lizajane.org/PN/Users/LizaJane/lizajane's thyroids.xls

Good luck in finding answers!

[Brian]

I can only add a good diet & supplements may help the healing process, in the stickies " Wings 42 " has excellent info' in his threads called " A program to heal nerve damage and reduce PN symptoms " its on this page.
http://neurotalk.psychcentral.com/sh...p?t=177&page=2
Also all about B12;
Rose's website http://roseannster.googlepages.com/home

Brian