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CHAPTER ONE
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Peripheral Neuropathy: Getting the Scoop
Mims Cushing
“That which does not kill us makes us strong.”
- Friedrich Nietzsche
ON THE ROAD TO UNDERSTANDING PN
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It’s 6:00 P.M. and the front door slams. Your daughter, granddaughter, friend,
or sister flops down in a chair and groans. “Oh, God, my feet are killing
me!” She flings off her high heels, and you take a good look at her shoes.
You would kill for them. They aren’t $850 Pradas or Manolo Blahniks. She
probably paid $30 for them at a discount store. They’re black and white with a
matching bow and 3-, maybe 4-inch high heels. So adorable, so fashionable, so
in. And so not in your closet.
She sits, rubbing her feet, wiggling them, and talks about her day. In 10
minutes, she walks into the kitchen for a burrito, and that’s the end of what
she likes to call her “monster pain.”
Whether you are male or female, you may have noticed for the past few
weeks that your feet are burning. Welcome to the world of strange symptoms.
Your feet may feel sunburned, but it’s only February and you haven’t been out
in the sun. You feel stinging or electrical shocks in your toes and on the soles
of your feet or even in other parts of your body. The pain escalates at night
when you climb into bed, or your foot bones ache when you walk. Maybe you
can’t move your feet properly, or your hands are difficult to control.
You used to fall asleep easily. You’ve tried over-the-counter pain remedies,
but they don’t work, and the darnedest thing is it’s uncomfortable having a
bedcover on your feet. What’s going on?
Symptoms of Peripheral Neuropathy
If your feet or other parts of your body bother you at night—burning,
stabbing, electrical pain—but not so much in the morning, it could possibly
be peripheral neuropathy.
If you put on smooth, clean leather shoes and it feels as though
you are walking on hundreds of grains of sand, it could be peripheral
neuropathy.
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Maybe you’ve also begun to notice a weird tingling. What on earth is
this? And, although you may try to deny it, you’re aware of bizarre shooting
pains in your feet, or even in your arms, bones, skin, or back. If these pains
are focused on your feet, you might think, I must be wearing the wrong
shoes. So you go around barefoot.
You are exhausted. You have no stamina. The strange sensations don’t
stop. Can this be a food allergy? If so, what do I stop eating? People ask you,
“How can your feet be numb and cause you pain, too?” I tell them to think of
their feet as one of the states in the United States, say, Vermont. In that state,
it can be raining, snowing, sunny, sleeting, and windy all in the same hour, or
at least in the same day. The feet are the same way.
You’ve heard that diabetics often have foot troubles, but you’re not a diabetic.
You wonder, What should I do? What is wrong with me? Am I losing
my mind? The answer, again, could be damage to the peripheral nerves. You
may remember from eighth grade science that your nervous system is divided
into two parts: the central nervous system, which consists of nerves of the
brain and spinal cord; and the peripheral nerves, which encompass all other
nerves in the body. These peripheral nerves transmit information from the
brain and spinal cord to every other part of the body, including your face,
torso, digestive system, organs, some muscle groups, and cranial nerves. The
peripheral nervous system allows you to move your muscles via muscle neurons.
It also transmits sensations like temperature, touch, and pain via the
sensory neurons to your brain. Those nerves that allow you to breathe and
digest are also part of the peripheral nervous system.
What causes neuropathy? It can be caused by direct damage to the nerve,
for instance, if you are injured in a sports accident or car crash. Diabetes, arthritis,
lupus, Lyme’s disease, alcoholism, or even viral infections (such as herpes
[shingles]), can be responsible. Pressure on a nerve (as occurs in carpal tunnel
syndrome) or an abnormal growth can cause damage. You might have been
exposed to poisons or medicines. Cancer and HIV—both as illnesses and
because of the agents used to treat them—can be sources of nerve damage. A
lack of vitamin B12 or minerals could be the problem. Still other neuropathies
are inherited, and others result from a person’s own immune system attacking
his or her nerves. Some types of peripheral neuropathy don’t involve pain, but if
yours does, or if you have other symptoms or concerns, it’s time to see a doctor.
As mentioned previously, in 1996, I felt like my toes and feet were having a
nervous breakdown, no pun intended. Little information was available. The Neuropathy
Association was in its infancy. There was no website, no newsletter, and
precious little had been written about peripheral neuropathy. Even today, if you
ask ten people if they know what peripheral neuropathy is, most of them will
shrug. And yet, The Neuropathy Association says 20 million people in America
have peripheral neuropathy. Twenty million—that’s around 6% of the total U.S.
population. Poor old peripheral neuropathy doesn’t get much play in the news.
Its mysterious symptoms baffle some doctors, although a great number of committed
medical professionals are researching this and other neurological issues.
Peripheral neuropathy is not simply a foot problem, but one that can
affect the whole neuromuscular system. It’s not easy to diagnose or treat. And
I keep hearing people say their doctors tell them, “There’s nothing we can do
about it.” As much as I hate to admit it, and never thought I would, if you have
had a second opinion, if you have done due diligence regarding research, and
if you are truly confident in your doctors, then “Go home and live your life”
may be the only thing to do. That said, plenty more can be done to help you
live that life, which you’ll read about all through this book.
People with other ailments are told to, as Oprah might put it, “Go live your
best life.” The first thing you should know is this: It is extremely unlikely that you
are going to die from it. You will die with it because, to date, there is no magic
pill. And you may have remissions, in which the pain goes away for a while.
Peripheral Neuropathy Defined
Put in the simplest possible terms, peripheral neuropathy is damage to
the peripheral nerves.
In his book, Peripheral Neuropathy, When the Numbness, Weakness,
and Pain Won’t Stop, Dr. Latov says, “Nerves have a limited capacity
to heal, so it is easier to prevent or stop neuropathy from progressing
than to heal it. In early or mild cases, however, neuropathy can be sometimes
be reversed.”1 That tip might start you thinking about seeing a doctor
sooner than you’d planned. I hope so.
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Knowledge Is Important
To illustrate the prevailing lack of awareness surrounding peripheral neuropathy,
I offer some information from two dictionaries. Both my user-friendly Random
House Webster’s 2000 College Dictionary and my gigantic, 2,662-page
Unabridged Webster’s Third New International Dictionary do not even list
peripheral neuropathy. The latter does list “peripheral neuritis” as an “inflammation
of one or more peripheral nerves.” Not exactly a fountain of information, is it?
Now look up “neuritis”: “An inflammatory or degenerative lesion of a nerve characterized
by pain, sensory disturbances, paralysis, muscle atrophy, and impaired
or lost reflexes in the part innervated.” Eugene Richardson, Neuropathy Association
support group leader and activist says, “Paralysis can be temporary or permanent,
and is very common with people who suffer from the immune-mediated
neuropathies, including the motor neuropathies or neuropathies due to toxins.”
Neuropathy is listed in the Unabridged Dictionary as “Any of various
abnormal states of the nervous system or nerves, especially when involving
degenerative changes. Stems from a primary degeneration of nervous tissue.”
Dr. Latov’s chapters describe neuropathy in greater detail.
If you aren’t into “touchy feely” stuff, you aren’t going to like hearing this,
but listen up: PNers feel better if they adopt a positive attitude. In Dr. James
N. Dillard’s book, written with Leigh Ann Hirschman, Chronic Pain Solution:
Your Personal Path to Pain Relief: The Comprehensive, Step-by-Step Guide
to Choosing the Best of Alternative and Conventional Medicine, the authors
verify this.2 Two chapters discuss the value of distracting yourself from the
pain. The best part of Chronic Pain Solution for PNers is, of course, the chapter
on peripheral neuropathies. It’s 10 pages in length.
Optimism Helps
In an article in AARP Bulletin3 The New England Journal of Medicine
was cited indicating that the single most important thing we can do for
our health revolves around our personal behavior, which means that
behavior, according to the Journal, is more important than genetics,
demographics, and even health care.
People who think their life is like a glass half full, not half empty, are
positive, optimistic people. They will feel better than those who are
always wondering, “Why me?” and who complain. Cheerful, confident
people won’t be as bothered by their condition as those who are gloomy,
pessimistic, or despondent due to wrong thinking and focus. Take your
pick. You do have a choice as to what you think about.
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What to Expect When You See Your Own Doctor
Let’s say you decide your symptoms have bothered you long enough. You
make an appointment with your regular internist or general practitioner (GP).
(The Neuropathy Association advises all patients to schedule a visit to a neurologist
for proper diagnosis and earlier detection.) You must bring in as complete
a history of your symptoms as you can. Dr. Michael Pulley, neurologist
with the University of Florida, says, “Some people aren’t good historians. It’s
extremely helpful to doctors if patients are good record keepers.” You don’t
have to make a full-time career out of journaling your pain or other symptoms,
but get a log started today.
- Your log should include the following, listed across the top of the page:
Symptoms Date Pain Level Pain Relief Drugs
- That will go a long way toward helping your doctor ferret out the
problem. A simple spiral-bound notebook will work fine (as
opposed to loose pages or chewing gum wrappers). If you are comfortable
dealing with spreadsheets, they are an excellent format for
record keeping.
- Google “Pain Diary” and print out the diary developed by the American
Geriatrics Society’s Health in Aging at their website. It will
help you record your pain, ways to alleviate it, and your level of
pain. You’ll impress yourself if you use it.
After a thorough check-up, your GP may suggest you see a neurologist.
Depending on your level of severity, that may or may not be immediately necessary.
If you can alleviate your discomfort with over-the-counter medications, fine.
If you’ve tried them, and they’ve failed, perhaps you need a prescription. Don’t
get sucked into the “We can’t do anything about it” talk until you have explored
every avenue available to you. If you want more answers, seek them. And
remember: Only a neurologist can accurately diagnose peripheral neuropathy.
What to Expect When You See a Neurologist
Before you choose a neurologist, talk to people in your support group and ask
them to recommend a doctor. Above all, find a neurologist who is board certified
in neurology and trained in neuromuscular neurology. You don’t usually
buy the first car you look at, so be finicky about choosing a neurologist—who
will probably outlive your car. And try to find one who is a good fit with you
from a personality standpoint, someone who makes you feel comfortable.
I used to think any person whose job title began with the word “neurosomething”
was scary. Maybe I still do. Neurosurgeons are the docs we think
about when we say, “It ain’t brain surgery.” These guys do brain surgery. A neurologist
is what you need, a specialist who deals with testings and evaluations
of frightening problems that other doctors may not have explanations for. And
you are going to see him about tingling and burning? Yes, you are. If it’s annoying,
frightening, or painful enough, causing you to lose sleep, forcing you to
struggle to stay employed, or changing your style of life then, yes, you are
going to see a neurologist.
Bring your pain diary. Your organized history will show the doctor you’re
serious about your illness and she’ll appreciate your coming to the point. The
neurologist will want to know 10 things:
- How would you describe your symptoms?
- When did you first notice them (onset and progression)?
- Has the pain changed your quality of life? Has it worsened? Lessened?
Stayed the same?
- Are you taking prescription medications? Over-the-counter ones?
- Do you take supplements?
- Do you have any other medical conditions that exist now? Ones
that existed in the past?
- How are you being treated for them? What medications?
- Does anyone in your family have neuropathy, or did anyone?
- Do you have sensations in your hands that mimic those in your feet
or in any other parts of your body?
- Was there an event that might be causing nerve compression?
What to Tell Your Doctor
Bob Williamson, Neuropathy Association support group leader from Virginia
Beach, Virginia, reminded me about writer Dr. James Dillard’s
handy OPQRST system of keeping a list to show your doctor. It’s another
way of recording your symptoms:
O = Onset. When did the pain start?
P = Provokes. What provokes the pain?
Q = Quality. What does the pain feel like?
R = Radiates. Does the pain travel or stay in place?
S = Site. Where do you feel the pain?
T = Timing. When do you get the pain and how long does it last?
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What Tests Will Be Performed?
Here’s what you can expect. Your neurologist:
- Will probably do tests you’ve had many times in general physicals
to see if your balance is intact, such as have you walk forward heel
to toe. Do you wobble or can you walk straight?
- May use quantitative sensory testing (QST) to follow your
progress and function, and use a vibrator stimulus to measure your
neuropathy. He’ll use a pin and lightly touch your feet in several
places to see how sensitive they are, and he may use a tuning fork
to test for abnormal reactions by the large nerve fibers. This vibration
testing determines how quickly your feet notice the vibrations
disappear. (With a normal foot, the vibrations last for a long time.)
- Will test your reflexes in the elbows and knees to see if there is a
loss of motor or sensory nerves.
- Will most likely want you to have a blood test. If you have
neuropathy, you may have something as simple as a vitamin B12 deficiency.
That can be remedied and may possibly stop the neuropathy.
- May elect to schedule you for nerve conduction studies to look for
large-fiber neuropathy or to perform a skin biopsy to test for smallfiber
neuropathy.
Notice that I didn’t say “foot pain” anywhere in this chapter’s subheadings.
That’s because many people do not have pain and/or do not have it in
their feet. It’s important to emphasize that, although the majority of complaints
involving neuropathy center around the feet, peripheral neuropathy—
as I mentioned earlier—can affect any part of the body where peripheral
nerves are located. Wherever your pain is, it’s important that your doctor listens
to your complaints and really hears you. When my first neurologist shook
my hand to say good-bye, he said, “I’m sorry about your pain.” I was disheartened.
He hadn’t listened. I’d never mentioned pain. I had told him, “It’s not
pain, it’s an annoyance. It drives me nuts, and is horrible, but it’s not pain.”
Maybe that’s splitting hairs. He said there was nothing he could do, so I persisted
and found help elsewhere.
Dr. Latov said, in his previous book, “If you talk to 10 people with neuropathy,
you may hear 10 different sets of symptoms, but if you ask another
100, you will probably hear the same 10.”
What to Ask about the Tests
Here are seven questions to ask your doctor from Working with Your Doctor,
by Nancy Keene4:
- What is the purpose of the test?
- How will it contribute to diagnosis or treatment?
- What are the risks associated with this test?
- Are there simpler, less risky ways of getting this information?
- What are the side effects, and how often do they occur?
- How reliable is this test?
- How reliable is the testing facility?
Be sure to take notes and, if the doctor is talking too fast say, “Slow
down!” Perhaps bring a tape recorder with you and record all this information
along with the results the next time you go into the office. The best memory
goes by the wayside at a doctor’s office. Ask for a copy of all your medical
records, especially tests. Save them.
The Doctor Says I Have Peripheral Neuropathy. Now What?
Everyone handles unpleasant medical news differently. Often, people can’t
even hear or process what the doctor says, which is why it’s good to bring
along your spouse or a friend. Some patients go into denial, while others want
to know everything immediately and start surfing medical books.
For a start, do two things: go online to www.neuropathy.org, then call The
Neuropathy Association at 1-888-PN-FACTS. The Neuropathy Association can
refer you to a neurologist, tell you where the Association-designated neuropathy
centers are, and give you the name of a support group near you. Ask to receive
their ongoing neuropathy news updates. You can receive them in two ways.
The Neuropathy Association’s E-Newsletter: Neuropathy E-News
Neuropathy E-News started in August 2007. It appears online monthly via email.
My feeling is that if there is something big going on with neuropathy, I’ll
read about it in Neuropathy E-News or in the Neuropathy News newsletter,
which is surely an important reason to read them. (Sign up for E-News on The
Neuropathy Association’s home page.)
Become a Contributing Member
Send $35 to The Neuropathy Association, 60 East 42nd Street, Suite 942,
New York, NY 10165, to become a contributing member, which might
make your feet feel better, keep you informed, and help research get
done. Or, make a donation by phone: 1-888-PN-FACTS. Mail or e-mail
them the story about your neuropathy after you’ve had it for some time.
It’s a therapeutic way for you to deal with your own issues, and it helps
others understand their own. Or, visit the Association’s bulletin board
(chat room) to connect with others and ask questions.
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The Printed Neuropathy Association Newsletter: Neuropathy News
If you are not a fan of the web, you may prefer a printed newsletter, which has
more comprehensive articles and different topics than the online version,
although sometimes they overlap a bit. The newsletter also has articles by
neurologists from around the country. It is delivered three times a year to all
The Neuropathy Association’s contributing members.
Other Resources
- Pnhelp.org is based in California. This is the website of the Northern
California Chapter of The Neuropathy Association, with a link
to The Neuropathy Association’s website. All the information on
peripheral neuropathy is clearly written and important for newcomers
to neuropathy—or old-timers.
- The National Peripheral Neuropathy Community (www.npnc.org)
has been in existence since 2001. It’s a wonderful site, filled with
energetic people on the bulletin board. It has a “Dawn Patrol” for
people looking for Internet chit chat, or more likely badly needed
support in the wee small hours of the morning. The NPNC’s motto
is “While science finds the cure, friendship will ease the pain.”
- There’s another bulletin board at www.neuropathy.org. These
boards are invaluable for people who want to feel connected to
others with peripheral neuropathy. You will learn a lot and, I hope,
share a lot too.
- A free copy of Neurology Now, published by the American Academy
of Neurologists, can be had by accessing www.neurologynow.
com. You’ll receive one free copy. If you want to subscribe
for a nominal fee, call the subscriptions office at 800-422-2681.
You must have a neurological disorder or be a caretaker of someone
with this disorder to qualify for the free issue, which covers
diseases relating to the nerves.
- IGLiving, available at www.igliving.com, is free to patients receiving
intravenous immunoglobulin (IVIg) treatment for autoimmune
neuropathies such as chronic inflammatory demyelinating polyneuropathy
(CIDP).
If Google is your Internet browser, try “Google Alerts.” Type in “Neuropathy”
and you will be asked, “How often do you want to be notified?”
You will be notified with information on the topic of neuropathy as often as
you like. You may find the alerts to be informative and enjoy hearing what
other patients have to say. Google Alerts may work with other search
engines.
Conduct Your Own Internet Research
If there is one piece of advice that any smart person dealing with neuropathy
would give you, it is this: Get involved with your own care. Being
a docile, “good” patient is not in your best interest. That’s the case with
many ailments today, and neuropathy is no exception. The Internet
makes it easier to do research, but surf carefully. Find the date on the
Internet piece you are investigating and ask yourself: How current is
this information? Who’s writing this? Is the source reliable? And, very
important: Is the writer trying to sell me something?
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Managing neuropathy is difficult because not all treatments or medications
benefit everyone. In fact, it’s often black or white. In any given support
group, some will cringe at the talk of a particular drug because they’ve had
such rotten side effects, yet others say they can’t live without it. It has “saved
their life.” What sense does it make that some coping solutions are poisonous
to some, but heaven-sent for others? Things that seem insignificant to people
without peripheral neuropathy may be an issue for PNers to deal with. Something
as simple as a thin top sheet on a bed can feel like heavy burlap—it can
be actually painful on one’s skin.
Do Your Homework to Understand Your Peripheral Neuropathy
In the mid-1990s, Esther K. experienced all the symptoms that we now know
suggest peripheral neuropathy. She went to an internist who, determining she
didn’t have diabetes, told her to go to a podiatrist who x-rayed her feet and
had no answers for her. Next, she went to an orthopedist who prescribed
orthotics, which provided no help for her at all. It is not uncommon to hear
this from people who visited physicians “in the old days,” which means not so
long ago.
Esther continued to suffer and figured this was to be her life. Then, one
day in 2001, reading the American Association of Retired People (AARP)’s
magazine, Esther found her symptoms laid out in front of her, in black and
white. It included an explanation of peripheral neuropathy and the advice that
she should see a neurologist, which she did.
Esther had no books to turn to in the 1990s. Until recently, books on
peripheral neuropathy have, with few exceptions, been restricted to pedantic,
expensive medical texts directed at physicians and difficult for the layperson
to comprehend. Things are turning around, at the speed of those TV tortoises,
the Slowskys. I am hopeful that this will change.
So much has to change. The public has many misconceptions about
peripheral neuropathy. About a week ago, my friend Madelyn told me that a
friend of hers, a highly educated author and lecturer, when told that I had neuropathy,
said, “Oh, well then, she must have diabetes.”
“No, she doesn’t,” said my friend.
“But she must,” this highly intelligent women repeated. And they went
back and forth with Madelyn, exasperated, finally saying to her author friend,
“Here’s Mims’s phone number. You call her.” I hope she will call me, so I can
clear up the misinformation. I will tell her neuropathy is not just for diabetics.
She and millions still believe the only way you can have peripheral neuropathy
is to have diabetes.
Whether you have diabetes or not, I truly believe you can live a good life
with your neuropathy. Eckhart Tolle, in the Oprah-touted book, A New Earth,
says we should make friends with our pain.5 That may be a reach for some,
but for almost every one of us, neuropathy is not life-threatening, and coping
is possible. Think of your peripheral neuropathy as a badly behaved child. Put
it in the time-out chair.
Common Symptoms
To sum up, here are common symptoms of peripheral neuropathy, compiled
from information presented on the websites www.neuropathy.org and
pnhelp.org, and from Neuropathy Association support group members:
- Numbness. Loss of sensation, usually starting in a toe or finger, and
moving up the limb. Feels similar to Novocain, except that it doesn’t
wear off.
- Burning or freezing. Can cause annoyance or extreme pain. Skin
will show a normal temperature, but you might feel as though your
limbs are freezing or boiling.
- Electrical shocks. Sharp, intense sensations. Can come on suddenly,
sporadically, and for no apparent reason.
- Tingling. Some describe this as feeling like having continuous pins
and needles.
- Sensitivity. Even though you can be numb or have a loss of sensation,
you can have unusual sensitivity to pressure, even light pressure.
Wind blowing on you as you lie on a beach can make you
want to cover yourself with a towel—and the towel can also be
annoying! Bed sheets are a big nuisance to some.
- “Stocking and glove.” Your feet may feel as though you are always
wearing a stocking or a shoe. You can get into bed and think you
are wearing shoes, but you are not. Your hands can feel as though
you are wearing tight gloves all the time.
- Loss of balance or coordination. If you can’t feel where your feet
are, in relation to the rest of your body, you will walk abnormally.
Muscles can weaken, atrophy. Tripping and falls are of concern.
Climbing stairs can be very difficult.
- Autonomic symptoms. This is less common, but peripheral neuropathy
can also upset the autonomic nerves—those that control
involuntary or semi-voluntary mechanisms. This can cause vertigo,
blurriness, intolerance to heat, gastrointestinal tract issues, and
impotence. A majority of peripheral neuropathy patients, however,
complain of problems in the limbs.
You may only have a few of these symptoms; you don’t need to have every
one of them to have peripheral neuropathy.
Don’t give up looking for information; more valuable books are listed in
the For Further Reading section.6–9 Above all, don’t lose heart; keep going. A
trunk load of tips is coming up. And if you come across terms or acronyms
that you don’t understand, look them up in the glossary at the end of the book.
For Further Reading
- Latov, Norman. Peripheral Neuropathy: When the Numbness, Weakness, and Pain
Won’t Stop A Guide for Patients and Their Families. New York: American Academy
of Neurology/Demos Medical Publishing, 2007.
- Dillard, James N. with Leigh Ann Hirschman. Chronic Pain Solution: Your Personal
Path to Pain Relief: The Comprehensive, Step-by-Step Guide to Choosing the
Best of Alternative and Conventional Medicine. New York: Bantam Books, 2002.
- Smith-Liebmann, Joan. “Push prevention, not pills.” AARP Bulletin, May 2008.
- Keene, Nancy. Working with Your Doctor: Getting the Healthcare You Deserve.
Sebastopol: O’Reilly & Associates, 1998.
- Tolle, Eckhart. A New Earth. New York: Penguin (Oprah Book Club edition), 2008.
- Cros, Didier. Peripheral Neuropathy: A Practical Approach to Diagnosis and Management.
Philadelphia: Lippincott Williams & Wilkins, 2001.
- Donoghue, Paul J. and Mary Siegel. Living With Invisible Chronic Illness: Sick
and Tired of Being Sick and Tired. New York: Norton, 1992.
- Groopman, Jerome. How Doctors Think. New York: Houghton Mifflin, 2007.
- Seneff, John A. Numb Toes and Aching Soles: Coping With Peripheral Neuropathy.
San Antonio TX: MedPress, 1999.
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