Information blog for people suffering from both Neuropathy and HIV. An opportunity to exchange experiences, tips and opinions.
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Isn't it frustrating when you're reading about a particular aspect of neuropathy and you come across a word, or words and you haven't got a clue what they mean? This alphabetical list of terms, again from the Foundation for PN (see list below) can provide a quick reference for most (though by no means not all) of those difficult medical terms. Some may seem slightly random, or general but people who read this blog have not just one chronic illness but two! It'll always be accessible in the list on the right hand side of this blog if needed.
Glossary of Terms
A
Acute pain
Pain that comes on suddenly and often accompanies illness, inflammation, or injury to tissues. It can last from a few seconds to many weeks, but generally goes away over time. The cause of acute pain can usually be diagnosed and treated.
Amino acid
A building block of proteins. There are 20 different kinds of naturally occurring amino acids.
Antibody
A protein molecule (also called an immunoglobulin) produced by white blood cells (B-cells, or B-lymphocytes) in response to an antigen (a foreign, often disease-causing, substance). The binding of antibody to antigen leads to the antigen's destruction.
Antigen
A substance or molecule that is recognized by the immune system and that causes a reaction. The molecule can be from a foreign material such as a bacterium or virus, or the molecule can be from the same organism (one's own body) and called a self-antigen.
Autoimmune disease
A condition in which the immune system mistakenly attacks the body's own organs and tissues.
Autonomic nerves
The part of the nervous system that regulates involuntary body functions such as blood pressure, heart rate, sweating, pupil size, digestion and sexual response. Damage to the autonomic nerves may result in a too fast or too slow heartbeat, difficulty swallowing, abnormal sweating, nausea, vomiting, diarrhea or constipation, problems with urination, and sexual dysfunction.
Autosome
Any of the non-sex-determining chromosomes. Human cells have 22 pairs of autosomes.
Axon
The thin, long fiber of a nerve cell (neuron) that extends from the nerve cell and carries messages from one nerve to another.
B
B-lymphocytes (B-cells)
White blood cells of the immune system. The B-cell produces antibodies that bind antigens.
Base
The basic subunit of DNA or RNA.
C
Cell
The basic subunit of any living organism. A small, watery, compartment filled with chemicals and a complete copy of the organism's genome, or genetic information (DNA).
Cell body
The part of a neuron (nerve cell) that contains the nucleus.
Central nervous system (CNS)
The part of the nervous system that consists of the brain and spinal cord.
Cerebrospinal fluid (CSF)
The fluid that surrounds and protects the brain and spinal cord.
Chromosome
A rod-shaped structure, located in the nucleus of a cell, that contains genes. It is made up of DNA and proteins. Chromosomes come in pairs and humans have 23 pairs of chromosomes, 46 in all: 44 autosomes and two sex chromosomes.
Chronic pain
Chronic pain lasts for longer periods of time than acute pain and is harder to treat. The cause of chronic pain may be difficult to determine - it may hang on for months after an injury appears to have healed, or there may be an ongoing cause of pain, like arthritis or cancer. The pain may also occur without any known disease or injury. The pain may be relatively constant or it may come and go.
D
Dendrite
The branch-like extensions of a nerve cell that receive information from other cells.
Diabetic neuropathy
A nerve disorder caused by diabetes; characterized by a loss or reduction of sensation in the feet, and in some cases the hands, and pain and weakness in the feet.
DNA (deoxyribonucleic acid)
The chemical inside the nucleus of a cell that carries the genetic instructions for making living organisms. Along with RNA, the two types of molecules that carry genetic information.
Dominant
A gene that almost always results in a specific physical characteristic, for example, a disease, even though the patient's genome (DNA, genetic information) possesses only one copy. With a dominant gene, the chance of passing on the gene (and therefore the disease) to children is 50-50 in each pregnancy.
E
Enzyme
A protein that initiates a chemical reaction, but doesn't change the direction or nature of the reaction.
Etiology
The study of the causes or origins of diseases or disorders.
G
Gamma globulins
Proteins in the blood that act as immunoglobulins or antibodies that fight infection. Also known as immune globulin (Ig).
Gene
The structure inside each cell that is the basic unit of inheritance. Made of DNA, genes contain the instructions that tell our bodies how to grow and develop and determine individual characteristics such as eye color and blood type. Each person has 2 copies of each gene, one inherited from each parent.
Genome
All of the DNA in an organism or a cell; all of the DNA a person contains. It includes both the chromosomes within the nucleus and the DNA in mitochondria.
Glial cell
Cells that provide physical and nutritional support to neurons.
H
Human genome project
An international research project to map each human gene and to completely sequence human DNA.
I
Idiopathic
A disease for which the cause is unknown.
Immune system
The complex group of cells and organs that defends the body against infection and disease.
Immunoglobulins (Ig)
Also called antibodies; proteins produced by plasma cells that help fight infections. There are five classes: IgA, IgD, lgG, IgM, and IgE.
Immunotherapy
Using the immune system to treat disease, for example, in the development of vaccines. May also refer to the therapy of diseases caused by the immune system.
Intravenous immunoglobulin (IVIg or IgG)
Gamma globulin therapy injected directly into the vein.
Inherited
Transmitted through genes from parents to offspring.
L
Locus
The place on a chromosome where a specific gene is located, a kind of address for the gene. Also, the DNA at that position. One locus, two loci.
Lymphocyte
A type of white blood cell of the immune system.
M
MRI (magnetic resonance imaging)
A diagnostic procedure that uses a magnet in conjunction with a computer to create pictures of areas inside the body.
Mitochondria
The main energy source in cells.
Molecule
A group of atoms arranged to interact in a particular way; the smallest unit of a substance that can exist on its own and keep the character of the substance.
Mononeuritis
Inflammation of a single nerve.
Motor nerves
Motor nerves send impulses from the brain and spinal cord to all of the muscles of the body and are responsible for voluntary movement. Motor nerve damage can lead to muscle weakness, difficulty walking or moving the arms, cramps and spasms.
Mouse model
A laboratory mouse useful for medical research because it has specific characteristics that resemble a human disease or disorder. Strains of mice having natural mutations similar to human ones may serve as models of such conditions. Scientists can also create mouse models by transferring new genes into mice or by inactivating certain existing genes in them.
Mutation
A change in the number, arrangement, or molecular sequence of a gene.
Myasthenia gravis
A chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. Myasthenia gravis is caused by a defect in the transmission of nerve impulses to muscles.
Myelin
The fatty substance around the nerve fibers (axon) that acts as insulation and improves the speed of conduction of nerve impulses. It is formed in the peripheral nervous system by Schwann cells.
N
Nerve
The cord-like bundle of fibers that is responsible for sending sensory and motor information throughout the body.
Neuron
The basic unit of the brain and nervous system. Neurons use electrical signals and chemical signals to send information to other nerve cells.
Neurotransmitter
A chemical messenger by which neurons (nerve cells) communicate with each other and with other cells.
Nucleotide
A subunit of DNA or RNA that includes one base, one phosphate molecule, and one sugar molecule (deoxyribose in DNA, ribose in RNA).
Nucleus
The central cell structure that houses the chromosomes. The organelle that contains the genetic information.
O
Organelle
A specialized structure having a definite function in a cell; for example, the nucleus, a mitochondrion, a ribosome.
P
Pathogenesis
The origin of a disease or disorder and the factors that cause the disease.
Peripheral nervous system (PNS)
The part of the nervous system that connects the brain and spinal cord (central nervous system) to the rest of the body.
Peripheral neuropathy
A common, often misdiagnosed disorder that results from damage to the peripheral nervous system. Symptoms include numbness, weakness, tingling and/or burning in the toes or fingers.
Phenocopy
A trait not caused by inheritance of a gene but that appears to be identical to a genetic trait.
Phenotype
The observable traits or characteristics of an organism, for example hair color, weight, or the presence or absence of a disease. Phenotypic traits are not necessarily genetic.
Plasma
The liquid portion of unclotted blood.
Plasma cell
A cell derived from B-cells; the main antibody producing form of B-cells.
Predisposition
To have a tendency or inclination towards something in advance.
Protein
A molecule made up of a number of amino acids arranged in a specific order determined by the genetic code. Proteins are essential for all life processes. Immunoglobulins (antibodies) are proteins.
R
Recessive
A genetic disorder that appears only in a person who has received two copies of a mutant gene, one from each parent.
Recessive gene
A gene that will be expressed only if there are 2 identical copies or, for a male, if one copy is present on the X chromosome.
RNA (ribonucleic acid)
A chemical found in cells and similar in structure to that of DNA. A single-stranded nucleic acid containing the sugar ribose. RNA delivers DNA's genetic message to the cytoplasm of a cell where proteins are made.
S
Sensory nerves
The nerves that transmit information about pain, touch, vibration, temperature and position to the brain. Sensory nerve damage often results in tingling, numbness, pain and extreme sensitivity to touch.
Serum
The liquid portion of clotted blood.
Sex chromosome
One of the two chromosomes that specify an organism's genetic sex. Humans have two kinds of sex chromosomes, one called X and the other Y. Normal females possess two X chromosomes and normal males one X and one Y.
Sex-linked
Traits or diseases associated with the X or Y chromosome. Sex-linked (or x-linked) diseases are generally seen only in males.
Synapse
The area between nerve cells or neurons that transmits nerve impulses.
Syndrome
The group or recognizable pattern of symptoms or abnormalities that indicate a particular trait or disease.
T
Toxins
Poisons produced by certain animals, plants, or bacteria.
Transgenic
An experimentally produced organism having genetic material (DNA) from another species. The genetic material becomes a part of the organism's DNA and can be transmitted from one generation to the next.
V
Vasculitis
Inflammation of the blood vessels.
Virus
An infectious agent that is composed of a protein coat around a DNA or RNA core. Viruses depend on living cells for their reproduction.
W White blood cell (leukocyte)
A type of blood cell that helps protect the body from infection. There are 5 basic types of leukocytes
One of the much-trumpeted and supposedly most promising, gene therapy treatments, for neuropathic problems, called SB-509, has been abandoned by the company involved. It's some consolation that they're now concentrating solely on HIV therapies. The company involved, (Sangam) has suffered a significant drop in its share value but for us, it's just too depressing. Hopefully other companies will continue, or resume the search for an effective treatment for neuropathy. Link to article below.
Sangamo Fails Diabetic Neuropathy Study, Falls Back on HIV, Other Programs by Luke Timmerman 10/3/11
Sangamo Biosciences’ lead drug candidate has flunked its biggest test yet in clinical trials, and the company said this morning that it’s time to move on to other programs.
The Richmond, CA-based company (NASDAQ: SGMO) said today that SB-509 failed in a study of 170 patients that randomly assigned patients with diabetic neuropathy to a new drug or a placebo. The company has now decided to scrap development of this particular drug, and will put more emphasis on its experimental treatments for HIV and single gene disorders.
Shares of Sangamo fell 22 percent to $3.38 shortly after the opening of trading this morning.
There wasn’t any sugarcoating of the results. Sangamo’s drug missed its primary and secondary goals, in which it was seeking to help diabetes patients fight one of the most common complications of the disease—numbness and tingling of nerves in the extremities. “We are disappointed,” said Edward Lanphier, Sangamo’s president and CEO, in a statement.
Sangamo’s study has been watched by scientists because of its potential for treating disease in a new way, through its zinc-finger protein technology. The technology is used to turn specific genes on or off in all kinds of living organisms, and one of the obvious applications is to turn off disease related genes in humans. Sangamo has shown some interesting results recently with a new treatment against HIV, and for a certain kind of hemophilia, but both programs are at earlier stages of development. Sangamo, which went public in 2000, has no drugs of its own on the market.
Following on from yesterday's post, today's articles from The Foundation for Peripheral Neuropathy (see link below) talk about alternative clinical tests to establish if neuropathy is present. The blog has already covered EMGs and tissue biopsies but doctors can also carry out Quantitive Sensory Testing (QST); Autonomic Testing and Lumbar Punctures (Spinal Taps). The following describes how and why but remember, many many people are tested for neuropathy without definitive results but this doesn't mean that they don't have it (the symptoms are pretty much unique to the disease). This is then referred to as Idiopathic Neuropathy.
Quantitative Sensory Testing (QST)
What is it?
Quantitative sensory testing (QST) is a method used to assess damage to the small nerve endings, which detect changes in temperature, and the large nerve endings, which detect vibration.
Why do it?
QST is used to diagnose and assess the severity of nerve damage, especially in the small nerve endings. It can also help determine if a neuropathy is responding to treatment. It is used to diagnose many different types of neuropathies, including peripheral neuropathies. It may also be used to identify where the nerves are damaged.
How is it performed?
QST uses a computer testing system to measure how the nerves involved react to vibration and changes in temperature. The test results are compared to a series of "normal" patients as well as to the patient's unaffected side.
How will it feel?
Depending on the specific test, the patient will feel mild vibrations and hot and cold sensations. The procedure is non-invasive—no needles are used. Overall, little or no discomfort should be felt during the test.
Autonomic Testing
Autonomic tests measure how the systems in the body that are controlled by the autonomic nerves respond to stimulation. The data collected during testing will indicate if the autonomic nervous system is functioning as it should, or if nerve damage has occurred.
What is it?
The nervous system has three parts: motor, sensory and autonomic. The autonomic system manages all internal functions such as blood pressure, blood flow, and sweating. Autonomic tests are conducted to see if the autonomic nervous system is functioning normally.
Why do it?
Autonomic testing can help determine if a patient is suffering from certain diseases that attack the autonomic nervous system, or as a way to diagnose an illness, or source of pain.
How is it performed?
To see if a disease is affecting the autonomic nervous system, several tests are done to monitor blood pressure, blood flow, heart rate, skin temperature, and sweating. By measuring these functions, it is possible to discover whether or not the autonomic nervous system is functioning normally.
Tests to measure blood pressure and heart rate include the tilt table test, a deep breathing test and the Valsalva maneuver. The tilt table test requires that the patient lie on a table that is then raised. The deep breathing test requires the patient to take deep breaths for a minute. The Valsalva maneuver requires that the patient blow into a tube to increase pressure in the chest. While these simple tests are performed, blood pressure and heart rate are monitored.
The Quantitative Sudomotor Axon Reflex Test (QSART) described separately, is another autonomic test performed to measure sweating and skin temperature.
How will it feel?
All testing is non-invasive and painless.
Lumbar Puncture (Spinal Tap)
What is it?
A cerebrospinal fluid (CSF) test (also known as a lumbar puncture or a spinal tap) is the most common method of collecting a sample of a patient's spinal fluid. The cerebrospinal fluid, normally clear and colorless, surrounds the brain and spinal cord and acts as a buffer. Any changes in the fluid's color, consistency or quantity may indicate a neurological disease or disorder.
Why do it?
To identify the presence of an autoimmune disorder, such as GBS or chronic inflammatory demyelinating polyneuropathy (CIDP), a sample of the patient's cerebrospinal fluid often must be analyzed. In a patient with GBS or CIDP, the fluid will contain more protein than usual, with no increase in the number of white blood cells or pressure.
How it's performed:
In the procedure, the patient is positioned lying on his/her side. A small anesthetic is injected into the skin in the middle of the lower back. A long, thin needle is inserted into this region and in the spinal canal. The CSF pressure is measured and fluid is collected for testing. After the sample is collected, the needle is removed and the patient must remain flat, or nearly flat, for an hour to two after the test.
A lumbar puncture with fluid collection may also be part of another procedure, particularly a myelogram (a CAT scan after dye has been inserted into the CSF).
How it will feel:
Overall, discomfort from the procedure is minimal. The entire procedure usually takes about 30 minutes. The actual pressure measurement and fluid collection take only a few minutes. Some patients experience headaches, hours or days after the test. These headaches almost always disappear spontaneously over time.
Elsewhere on the blog, are posts about the most common test for neuropathy: the Electromyography or EMG but that's not the only test that can be done to establish whether Neuropathy is the cause of your complaints. Today's post from The Foundation for Peripheral Neuropathy,(see link below) concerns something else you may have seen mentioned in this regard: the Nerve / Skin / Muscle / Tissue Biopsy. As you probably know, a biopsy is the taking of a small piece of tissue from a certain area, for microscopic investigation in a lab elsewhere. We normally hear of it in suspected cancer cases. It's not usually carried out for neuropathy unless close investigation of small nerve damage is deemed necessary by your doctor. If this happens to be one of your options, this short article explains clearly and concisely what's involved.
Nerve / Skin / Muscle / Tissue Biopsy
Biopsies are small samples of nerves, skin, muscle or other tissues that are removed from the body. The samples are examined to identify and diagnose various disorders.
What is it?
A biopsy is a minor surgical procedure which involves making a small incision to remove a sample of nerve, skin, muscle or tissue for examination.
Why should I do it?
A nerve biopsy may help distinguish between demyelination (damage to the myelin sheath covering the nerve) and axon degeneration (destruction of the axonal portion of the nerve cell). It may also help identify an inflammatory neuropathy or confirm specific diagnoses.
A nerve biopsy is invasive and is useful only in certain circumstances.
A skin biopsy is helpful to distinguish certain disorders that might affect the small nerve fibers, as may be the case with painful sensory axonal neuropathies.
A muscle or other tissue biopsy is used to diagnose and identify damage caused to muscles and organs as a result of various disorders such as Charcot-Marie-Tooth disease, sarcoidosis and amyloidosis.
How is a nerve biopsy performed?
A nerve, skin, muscle or other tissue biopsy usually is a simple outpatient procedure. For a nerve biopsy, a local anesthetic is used to numb the area. The surgeon makes a small incision and removes a portion of the nerve, usually from the ankle or the calf. The sample is then examined for abnormalities under a microscope.
A skin, muscle or other tissue biopsy is performed much the same way, except that the surgeon removes skin, muscle, or other tissue instead of nerve.
How will it feel?
Because a local anesthetic is used, discomfort during the procedure is usually minimal. The anesthetic may burn or sting when first injected. After the procedure, the area may feel tender or sore for a few days. An area of the skin may remain permanently numb after the biopsy.
You will see the same comments from today's post, on most sites and forums dealing with neuropathy. I have taken a sample of comments from one forum but both here and on other sites, the same sorts of reactions go on for page after page. They don't make cheerful reading and highlight how confused people are, both with the disease itself and its many variations and the medications that are routinely prescribed to help with the symptoms. The fact remains that a certain medication, or supplement, or alternative remedy will help some individuals but not others and thereby lies the frustration of neuropathy. Until a major breakthrough is made (and don't hold your breath folks!) 'suck it and see' will remain the doctor's philosophy on treating the problems we all know about. Is it good enough? Do they have a choice?
The comments come from a health forum on Topix.com (see link below) and as always, the names are removed to take account of sensibilities.
Try home remedies for neuropathy
January 2010
I suffer and I mean suffer, with neuropathy for over 20 years. Every doctor I"ve seen has prescribed me with one terribe pill after another. Lyrica, makes me feel like a zombie. Cybalta, which is for depression knocks me out all day, Im trying neurontin , but it also makes me feel so weird that I can't work on it, So I take larger doses on the weekends. But that ruins my weekends, and Im seeing no relief at all. So now Im looking for herbal remedies, because I've got this throughout my whole body now. And I dont want to end up in a wheelchair unable to move a muscle . If anyone knows of any herbal relief I'd really appreciate the news. Burning and numb, in Ohio.
March 2008
There are a couple of other things I would recommend for someone with Peripheral Neuropathy, something I also suffer from.
I've found Solarcaine with Aloe (a green gel, used mostly for sunburn) helps--it has lidocaine in it which helps to numb the skin. And capzaicin, under the brand name Capzazin, helps, too. Capzaicin is a very spicy pepper, which helps to lower the amount of Substance P in the nerve endings, when applied.
Sometimes, the extremely hot sensation from the neuropathy is worse than the stabbing pain, and I've been told that over time, the pain will diminish and numbness will take its place.
December 2008
My husband has horrible pain every day and night from neuropathy in his feet. I massage them every night for him. Only to get a small amount of relief from the pain. Do you have any suggestions for home remedies besides what you have suggested.
He works very hard every day standing and climbing ladders. So this causes a large amount of pain. Please help!
January 2009
H F wrote: My husband has horrible pain every day and night from neuropathy in his feet. I massage them every night for him...
How on earth does he stand you touching them? I was diagnosed in Jan '08 and I have had a really tough time. My diagnosis came a year and a half after I had been complaining to my Dr. about my feet hurting. We just thought that it was where I had been working so much. Sometimes it feels as if the tops of my toes have been cut off and exposed. And just forget the shower head! The water hurts! I will keep him in my prayers. I had heard that vitamins which support the nervous system help, but I haven't seen much of a difference. God Bless!
January 2009
I suffer from that too....did your feet change color? mine did...and the pain is traveling up my legs. My DR. says nothing can be done the damage has allready taken place, only thing he can do is prescribe medication to slow the disease down.The pill known as Lyrica really helps...but is very expensive...any other recomendations will be helpful...thank you.
January 2009
My feet sometimes seem really red and other times, reaaly white. They burn, alot! I am currently taking Neurontin, but I hear Lyrica is better. I do not have insurance, so believe me I know about expensive precriptions. Pfizer has patient assistance programs, maybe that can help anyone who is stuggling to pay for meds. I had to go to the ER one night , and the dr.I saw has neuropathy. It so helps to be able to talk with someone who understands what you are going through. Sometimes when I tell people what I am experiencing, I feel like a hypacondriac (sp?). Also, I wear Crocs. The nubbies help increase blood flow, therefore creating new nerve endings. Also, Merrells. They provide good airflow. Here lately I have been able to keep lotion on my feet and that helps. For me night time is the worst! When I lay down, my feet have me to the point of crying. God Bless! I am praying!:)
January 2009
K wrote: My feet sometimes seem really red and other times, really white. They burn, alot! I am currently taking Neurontin, but I hear Lyrica is better. I do not have insurance...
K....ask your Dr. for some free sample of lyrica...if he or she has it on hand... my Dr. gave me a month and a half. it really made the pain go away at night...and made the day more pleasant I will keep you in my prayers and hope your Dr. can help you...Lord bless you...
January 2009
Thank you so much! As a mother of three, I am not allowed to be "out of commission." I have heard that the Lyrica would help, I guess I just didn't realize how much. Could you feel a change pretty quickly? What you taking before? The Neurontin is all I have taken and it zombifies me. Thanks again!
January 2009 K wrote:
Thank you so much! As a mother of three, I am not allowed to be "out of commission."...
Hi K...Lyrica doesn't make you feel woozie or out of sorts it,s not a opiate, it works within minutes, I have to take it every eight hours, I take hydrocondone too it helps, it takes the pain away too... hope and pray your Dr. can help.
March 2009
I am taking 900mg of Neurotin and 150 of Lyrica and I haven't seen ANY relief. How much are you taking to get relief? Is there a specialist in this Neuropathy field? My neuruolist is not helping me a bit. Have had Cat Scans amd MRI to see why I have this prolem. Nothng came up to show why:( What should I do next?
March 2009
Mine has gotten worse! My feet hurt so bad lately, that I can't even walk! I go to the doctor on Wednesday. I have also noticed that the same shooting pain that I feel in my feet, I also feel in my finger tips. Please just pray for me. Sometimes I feel misdiagnosed. I was giagnosed with Diabetes and Neuropathy at the same time. There for a while I thought that maybe I was battling depression, but I am not a depressed person. Then I began to think that maybe the neurontin is messing with my emotional state. Is anyone else feeling this? Neurontin does NOTHING for my pain! Thanks for all the input. It helps to know that I am not the only one experiencing all of this!
April 2009
I used to work for a neurologist and i hate to tell you but Neurotin can cause depression also can actually magnify the pain. Neuropathy can also be found in any limb. This includes your hands.
May 2009
Be careful - neuronton turned me into an unproductive depressed angry sad person. At first it helped a lot then slowly more and more was necessary - then soon enough the symptoms were as bad as the pain. Big ole bummer!
June 2009
My husband also suffering with horrible pain in feet with neuropathy. there is no relif to his pain from 2months. he is taking pregablin 150mg, supractive tab's. but there is no relife please help me to relife my husband from neuropathy. please help me.
August 2009
I have had neuropathy now for 8 mos.I'm on 900mg of gabapentin and there was relief at the beginning but now it doesn,t help at all.Will a neurologist help?
August 2009
I have Diabetes 2 with advanced neuropathy and am having a terrible time.,was up most of the night last night .I have an app. with a neurologist this Friday .Will let u know .A lot of doctors don't believe your pain. i have tried neurontin, lyrica-no don't work. Decent strength pain meds-timed release are the only thing that helps. I
am currently between doctors as mine retired suddenly and am really suffering.
August 2009
I am on 1200mg of gabapentin a day. For the first few days it helped and then slowly stopped working less and less. I have pain in my lower back, shooting pains in both legs, stinging pain in both feet. And Im partially numb in one leg and foot. Back surgery didn't help. And now I have problems sleeping. I feel like a zombie. I have tried Lyrica and Savella with no results. I really need some help and don't know where to turn. The neurosurgeon told me that he has done all he can do for me.
August 2009
I have "polyneuropathy" but it's worse in the feet and lower limbs. I take Neurontin with some relief. Have had this for 12 years and am now age 72. Doctors say in 80% the cause is unknown. In my case the cause is known - heavy drinking over man years. I quit altogether 12 years ago as my feet and legs were feeling "funny." Since then have had the neuropathy which waxes and wanes but is always present and like "death by a thousand cuts."
A slightly unusual post today and also one directed at a relatively small group of people who have both HIV and neuropathy...poppers users. There may also be people who have a history of inhalant use (or abuse) and other people who work in situations where gases and fumes play a major role, to whom this may apply. Did you know about the link between poppers and neuropathy? No me neither. The post is from the American National Institute on Drug Abuse (see link below)and describes, in a general article, the potential effects of inhalant abuse on the body. This applies to an obvious section of the HIV population who use, or have used poppers over an extended period and are thus exposed to yet another risk of neuropathy...who knew! Then again, it's logical but by no means inevitable if you think about it...an interesting article.
NIDA InfoFacts: Inhalants
Inhalants are a diverse group of volatile substances whose chemical vapors can be inhaled to produce psychoactive (mind-altering) effects. While other abused substances can be inhaled, the term “inhalants” is used to describe substances that are rarely, if ever, taken by any other route of administration. A variety of products common in the home and workplace contain substances that can be inhaled to get high; however, people do not typically think of these products (e.g., spray paints, glues, and cleaning fluids) as drugs because they were never intended to induce intoxicating effects. Yet young children and adolescents can easily obtain these extremely toxic substances and are among those most likely to abuse them.
What Types of Products Are Abused as Inhalants?
Inhalants generally fall into the following categories:
* Volatile solvents—liquids that vaporize at room temperature
* Industrial or household products, including paint thinners or removers, degreasers, dry-cleaning fluids, gasoline, and lighter fluid
* Art or office supply solvents, including correction fluids, felt-tip marker fluid, electronic contact cleaners, and glue
* Aerosols—sprays that contain propellants and solvents
* Household aerosol propellants in items such as spray paints, hair or deodorant sprays, fabric protector sprays, aerosol computer cleaning products, and vegetable oil sprays
* Gases—found in household or commercial products and used as medical anesthetics
* Household or commercial products, including butane lighters and propane tanks, whipped cream aerosols or dispensers (whippets), and refrigerant gases
* Medical anesthetics, such as ether, chloroform, halothane, and nitrous oxide (“laughing gas”)
* Nitrites—a special class of inhalants that are used primarily as sexual enhancers
Organic nitrites are volatiles that include cyclohexyl, butyl, and amyl nitrites, commonly known as “poppers.” Amyl nitrite is still used in certain diagnostic medical procedures. When marketed for illicit use, organic nitrites are often sold in small brown bottles labeled as “video head cleaner,” “room odorizer,” “leather cleaner,” or “liquid aroma.”
These various products contain a wide range of chemicals such as—
* butane (cigarette lighter refills, air fresheners), and
* nitrous oxide (whipped cream dispensers, gas cylinders).
Adolescents tend to abuse different products at different ages.1 Among new users ages 12–15, the most commonly abused inhalants are glue, shoe polish, spray paints, gasoline, and lighter fluid. Among new users age 16 or 17, the most commonly abused products are nitrous oxide or whippets. Nitrites are the class of inhalants most commonly abused by adults.2
How Are Inhalants Abused?
Inhalants can be breathed in through the nose or mouth in a variety of ways (known as “huffing”), such as sniffing or snorting fumes from a container, spraying aerosols directly into the nose or mouth, or placing an inhalant-soaked rag in the mouth. Users may also inhale fumes from a balloon or a plastic or paper bag that contains an inhalant.
The intoxication produced by inhalants usually lasts just a few minutes; therefore, users often try to extend the “high” by continuing to inhale repeatedly over several hours.
How Do Inhalants Affect the Brain?
The effects of inhalants are similar to those of alcohol, including slurred speech, lack of coordination, euphoria, and dizziness. Inhalant abusers may also experience lightheadedness, hallucinations, and delusions. With repeated inhalations, many users feel less inhibited and less in control. Some may feel drowsy for several hours and experience a lingering headache. Chemicals found in different types of inhaled products may produce a variety of additional effects, such as confusion, nausea, or vomiting.
By displacing air in the lungs, inhalants deprive the body of oxygen, a condition known as hypoxia. Hypoxia can damage cells throughout the body, but the cells of the brain are especially sensitive to it. The symptoms of brain hypoxia vary according to which regions of the brain are affected: for example, the hippocampus helps control memory, so someone who repeatedly uses inhalants may lose the ability to learn new things or may have a hard time carrying on simple conversations.
Long-term inhalant abuse can also break down myelin, a fatty tissue that surrounds and protects some nerve fibers. Myelin helps nerve fibers carry their messages quickly and efficiently, and when damaged, can lead to muscle spasms and tremors or even permanent difficulty with basic actions such as walking, bending, and talking.
Although not very common, addiction to inhalants can occur with repeated abuse. According to the 2007 Treatment Episode Data Set, inhalants were reported as the primary substance abused by less than 0.1 percent of all individuals admitted to substance abuse treatment.3
What Other Adverse Effects Do Inhalants Have on Health?
Lethal Effects
Sniffing highly concentrated amounts of the chemicals in solvents or aerosol sprays can directly induce heart failure and death within minutes of a session of repeated inhalation. This syndrome, known as “sudden sniffing death,” can result from a single session of inhalant use by an otherwise healthy young person. Sudden sniffing death is particularly associated with the abuse of butane, propane, and chemicals in aerosols.
High concentrations of inhalants may also cause death from suffocation by displacing oxygen in the lungs, causing the user to lose consciousness and stop breathing. Deliberately inhaling from a paper or plastic bag or in a closed area greatly increases the chances of suffocation. Even when using aerosols or volatile products for their legitimate purposes (i.e., painting, cleaning), it is wise to do so in a well-ventilated room or outdoors.
* Peripheral neuropathies or limb spasms—glues, gasoline, whipped cream dispensers, gas cylinders
* Central nervous system or brain damage—spray paints, glues, dewaxers
* Bone marrow damage—gasoline
Serious but Potentially Reversible Effects
* Liver and kidney damage—correction fluids, dry-cleaning fluids
* Blood oxygen depletion—varnish removers, paint thinners
* HIV/AIDS, Hepatitis, and Other Infectious Diseases
Because nitrites are abused to enhance sexual pleasure and performance, they can be associated with unsafe sexual practices that greatly increase the risk of contracting and spreading infectious diseases such as HIV/AIDS and hepatitis.
This subject has been covered once already on the blog but the fact is, that under the physical and mental stresses of having both HIV and neuropathy, the likelihood that men will be affected by ED is so much greater than normal. All the more reason to find out what exactly happens in that process and why it can go wrong. This article from the Official Foundation of the American Urological Association (see link below) gives an extensive description of how and why, although it doesn't talk at length about neuropathy, it is mentioned as a recognised cause. Given that we know that ED can be a problem, especially for sufferers of autonomic neuropathy, this article will provide lots of useful information.
Non-Surgical Management of Erectile Dysfunction (ED)
Erectile dysfunction (ED) is a medical term that describes the inability to achieve and or maintain an erect penis adequate for sexual function. This condition is one of the most common sexual problems for men and increases with age. It is estimated between 15 to 30 million American men suffer from ED, although not all men are equally distressed by the problem.
Most men have difficulty with erections from time to time, yet in some men, it is a regular and more severe problem. It can cause low self-esteem, performance anxiety, depression and stress. ED may affect the quality of a marriage or intimate relationships. However, there are many safe and effective ED treatments available.
What happens under normal conditions?
Achieving a normal erection is a complex process involving psychological impulses from the brain, adequate levels of the male sex hormone testosterone, a functioning nervous system, and adequate and healthy vascular tissue in the penis.
The simplest way to describe the process of erection is to think of a washing machine. The "on-off" switch (the brain) initiates the process; the wires in the washing machine (the nerves) carry the electrical signal to the pipes (the blood vessels); when an appropriate signal arrives a valve opens to allow water to flow in (the arteries carry blood into the penis); and the drain shuts (the penile veins close). Water flows in and fills the tank (the penis fills with blood and becomes erect) and the wash cycle begins (enjoys sexual activity). At the end of the wash cycle this process reverses; the switch goes to the off position (the brain terminates erection); the valve closes (the arteries markedly decrease blood inflow); and the drain opens draining the wash tank of water (the veins open, blood leaves the penis and erection subsides).
How do erections occur?
When a man is not sexually aroused, his penis is soft, limp or flaccid. During sexual arousal, nerve messages release chemicals that increase blood flow into the penis. The blood flows into two erection chambers made of spongy tissue (the corpus cavernosum) in the penis. The “smooth muscle” in the erection chambers relaxes, which allows blood to enter and remain in the chambers. The pressure of the blood in the chambers makes the penis firm, producing an erection. After a man has an orgasm, the blood flows out of the chambers and the erection subsides.
What are the risk factors for ED?
The most common risk factors for ED are:
• Age over 50
• Diabetes
• High blood pressure
• High cholesterol
• Smoking
• Cardiovascular disease
These conditions over a period, can lead to a degeneration of the penile blood vessels, leading to restriction of blood flow through the arteries and to erectile tissue damage, which allows leakage of blood through the veins during erection.
Abnormally low levels of circulating testosterone may cause ED, although low testosterone is found in a minority of men who develop ED. Low levels of sexual desire, lack of energy, mood disturbances, loss of muscle strength and depression can all be symptoms of low testosterone. A simple blood test can determine if the testosterone level is abnormally low. Low levels of testosterone can be replaced by using a number of different delivery systems (e.g., shots, skin patches, gels, sub-dermal implants).
The choices made in life can lead to degeneration of the erectile tissue and the development of ED. Smoking, drug or alcohol abuse, particularly over periods of time, will compromise the blood vessels of the penis. Lack of exercise and a sedentary lifestyle also contribute to the development of ED. Modifying these risk factors may contribute to overall health and in some individuals correct mild ED.
Patients undergoing surgery or radiation therapy for cancer of the prostate, bladder, colon or rectum are at high risk for the development of ED. Drugs used to treat these risk factors listed above may also lead to or worsen ED.
Another cause of ED is peripheral neuropathy in which the nerves leading to the penis fail to send coordinated signals to the penis. Peripheral neuropathy can be caused by diabetes, HIV infection, certain medications and other less common conditions.
What causes ED?
ED can result from medical, physical or psychological factors. ED may be caused by a combination of factors that could also include medicine, alcohol or drugs. The physical and medical causes of ED include three basic problems:
• Not enough blood flows into the penis. Many conditions can reduce blood flow into the penis, examples include heart disease, diabetes and smoking.
• The penis cannot store blood during an erection. A man with this problem, called venous leak or cavernosal dysfunction, cannot maintain an erection because blood does not remain trapped in the penis. This condition can occur to any man regardless of age.
• Nerve signals from the brain or spinal cord do not reach the penis. Certain diseases, injury or surgery in the pelvic area can damage nerves in the penis.
Sexual activity requires the mind and body to work together. Psychological, emotional or relationship problems can cause or worsen ED; and include but are not limited to:
• Depression
• Relationship conflicts
• Stress at home or work
• Anxiety about sexual performance
Many prescription and over-the-counter medications may have side effect often causing erection difficulties. Drugs such as marijuana, heroin, cocaine and alcohol can lead to sexual problems.
If your ED is due to a hormonal problem, such as low testosterone or diabetes, you may be referred to an endocrinologist. Your healthcare provider may also refer you to a mental health professional. These specialists treat psychological or emotional causes of ED. Even if your ED is not caused by these factors, it may contribute to them. It may be helpful to get counseling, alone or with your partner, in addition to getting medical therapy for ED.
Who gets ED?
Studies show about one-half of American men over age 40 have some degree of ED. At one time, health care providers thought that psychological problems, such as stress and anxiety, were the main causes of ED. Recent studies show most ED cases have a physical cause. While ED becomes more common as men age, growing old is not the cause of the problem. Though sexual function may decrease with age, many men enjoy sexual activity well into their senior years.
ED can be an early warning sign of a more serious illness, such as heart disease, high blood pressure or diabetes mellitus. Diagnosing and treating the condition that causes ED can improve your overall well being, as well as help restore your sexual health.
How is ED diagnosed?
ED is diagnosed by an urologist or another medical professional and for most patients the diagnosis will require a simple medical history, physical examination and a few routine blood tests.
Medical History exam requires health care providers to ask about you, and your ED experience. The doctor will also want to know if you have any other conditions that might affect your ED, such an any endocrine problems or depression. They may ask questions about your sexual history and performance, which may be very personal but necessary to understand the root cause of the problem. The important thing to remember is not to be embarrassed while speaking with your physician and to be very open to allow for the best treatment options for you. Other questions the physician is likely to ask are the following:
• Your current sexual function
• When you started noticing changes
• Any past medical or sexual problems
• Surgery or injury to the pelvic area
• Current and past medication usage
• Lifestyle and personal habits (i.e. smoking, drinking, use of illicit drugs, etc.)
• Relationship with current and past partners
Physical Examinations means the doctor will check your overall health and physical condition. They will look for signs of problems with your circulatory, nervous and endocrine systems. This includes checking your blood pressure, penis and testicles, and you may need to have a rectal exam to check the prostate. These tests are not painful and may provide valuable information about the cause of ED. Most patients do not require extensive testing before beginning treatment.
The choice of testing and treatment depends on the goals of the individual. If erection returns with simple treatment like oral medication and the patient is satisfied, no further diagnosis and treatment are necessary. If the initial treatment response is inadequate or the patient is not satisfied, then further steps may be taken. In general, as more invasive treatment options are chosen, testing may become more complex.
What are some non-surgical treatments?
The first line of therapy for uncomplicated ED is use of oral medications known as phosphodiesterase-5 inhibitors (PDE-5):
• sildenafil citrate (Viagra®),
• vardenafil HCl (Levitra®),
• tadalafil (Cialis®)
Men with ED take these pills before beginning sexual activity and the drugs boost the natural signals that are generated during sex, thereby improving and prolonging the erection itself. The medication works by relaxing the muscle cells in the penis, allowing for better blood flow and production of a rigid erection. These medications are often effective, and nearly 80% of men show improvement once they begin use. The drugs are effective regardless of race and age. Although studies have shown these medications can be used by heart patients, men taking nitrates should speak with their physician before use to understand the possible drug interactions or effects on their other health conditions.
The side effects of PDE-5 inhibitors are mild and usually transient, decreasing in intensity with continued use. The most common side effects are headache, stuffy nose, flushing and muscle aches. In rare cases, sildenafil can cause temporary blue-green shading of vision. There is no long-term risk and decreases as the amount of the drug in the body decreases. It is important to follow the medication instructions in order to get the best results. Tests have shown 40 percent of men who do not respond to sildenafil will respond when they receive proper instruction on the medications' use.
For men who do not respond to oral medications another drug, alprostadil, is approved for use in men with ED. This drug comes in two forms: injections that the patient places directly into the side of the penis and an intraurethral suppository. Success rates in achieving a firm erection useful for sexual intercourse with self-injection can reach 85 percent. Modifying alprostadil to allow intraurethral delivery avoids the need for a shot, but reduces the likelihood of successful treatment. The most common adverse effects of alprostadil use are a burning sensation in the penis and a prolonged erection lasting over four hours, requiring medical intervention to reverse the erection.
For men who cannot or do not wish to use drug therapy, an external vacuum device may be acceptable.
This device combines a plastic cylinder or tube that slips over the penis, making a seal with the skin of the body. A pump on the opposite end of the cylinder creates a low-pressure vacuum around the erectile tissue, which results in an erection. To keep the erection once the plastic cylinder is removed, a rubber constriction band goes around the base of the penis, which maintains the erection. With proper instruction, 75 percent of men can achieve a functional erection using a vacuum erection device.
Some men who have severe penis tissue degeneration do not respond to any of the treatments listed above. While this is a small number of men, they usually have the most severe forms of ED. Patients most likely to fall into this group are men with advanced diabetes, men who suffered from ED before undergoing surgical or radiation treatment for prostate or bladder cancer and men with deformities of the penis called Peyronie’s disease. For these patients reconstructive prosthetic surgery (placement of a penile prosthesis or "implant") will create an erection, with patient satisfaction rates approaching 90 percent. Surgical prosthetic placement normally can be performed in an outpatient setting or with one night of hospital observation. Possible adverse effects include infection of the prosthesis or mechanical failure of the device.
What can be expected after treatment?
All of the treatments, with the exception of prosthetic reconstructive surgery, are temporary and meant for use on demand. The treatments compensate for but do not correct the underlying problem in the penis. It is important to follow-up with your doctor and report on the success of the therapy. If your goals are not reached, if your erection is not of sufficient quality or duration and you are still distressed, you should explore the alternatives with your doctor. Because the medications used are not correcting the problems leading to ED, your response over time may not be what it once was. If such should occur again, have a repeat discussion with your physician about the remaining treatment options.
If ever an article was likely to frighten the living daylights out of the HIV patient with neuropathy, it's this one from the National Institute of Neurological Disorders and Stroke (see link below). Most people will put all this information in perspective and realise that this is only a list of possible neurological complications associated with HIV and nothing more. However, some desperate people take information from the internet as being the gospel truth and worse, see it as an inevitable sequence of events. This is a perfectly natural reaction when you're in medical trouble, so please don't write it off automatically as hypochondria. You know what both HIV and neuropathy are like - they leave you frustrated and looking for answers but as in life generally, everything on the internet should be taken in moderation - it is an invaluable information source (this blog couldn't exist without it) but is an aid to better understanding, not a complete diagnosis of your own situation. The point is, don't let the information below alarm you...look at each neurological condition as an absolute worst-case scenario and everything else will remain in perspective.
Neurological Complications of AIDS
How does AIDS affect the nervous system?
The virus does not appear to directly invade nerve cells but it jeopardizes their health and function. The resulting inflammation may damage the brain and spinal cord and cause symptoms such as confusion and forgetfulness, behavioral changes, headaches, progressive weakness, and loss of sensation in the arms and legs. Cognitive motor impairment or damage to the peripheral nerves is also common. Research has shown that the HIV infection can significantly alter the size of certain brain structures involved in learning and information processing.
Other nervous system complications that occur as a result of the disease or the drugs used to treat it include pain, seizures, shingles, spinal cord problems, lack of coordination, difficult or painful swallowing, anxiety disorder, depression, fever, vision loss, gait disorders, destruction of brain tissue, and coma. These symptoms may be mild in the early stages of AIDS but can become progressively severe.
In the United States, neurological complications are seen in more than 50 percent of adults with AIDS. Nervous system complications in children may include developmental delays, loss of previously achieved milestones, brain lesions, nerve pain, smaller than normal skull size, slow growth, eye problems, and recurring bacterial infections.
What are some of the neurological complications that are associated with AIDS?
AIDS-related disorders of the nervous system may be caused directly by the HIV virus, by certain cancers and opportunistic infections (illnesses caused by bacteria, fungi, and other viruses that would not otherwise affect people with healthy immune systems), or by toxic effects of the drugs used to treat symptoms. Other neuro-AIDS disorders of unknown origin may be influenced by but are not caused directly by the virus.
AIDS dementia complex (ADC), or HIV-associated dementia (HAD), occurs primarily in persons with more advanced HIV infection. Symptoms include encephalitis (inflammation of the brain), behavioral changes, and a gradual decline in cognitive function, including trouble with concentration, memory, and attention. Persons with ADC also show progressive slowing of motor function and loss of dexterity and coordination. When left untreated, ADC can be fatal. It is rare when anti-retroviral therapy is used. Milder cognitive complaints are common and are termed HIV-associated neurocognitive disorder (HAND). Neuropsychologic testing can reveal subtle deficits even in the absence of symptoms.
Central nervous system (CNS) lymphomas are cancerous tumors that either begin in the brain or result from a cancer that has spread from another site in the body. CNS lymphomas are almost always associated with the Epstein-Barr virus (a common human virus in the herpes family). Symptoms include headache, seizures, vision problems, dizziness, speech disturbance, paralysis, and mental deterioration. Individuals may develop one or more CNS lymphomas. Prognosis is poor due to advanced and increasing immunodeficiency, but is better with successful HIV therapy.
Cryptococcal meningitis is seen in about 10 percent of untreated individuals with AIDS and in other persons whose immune systems have been severely suppressed by disease or drugs. It is caused by the fungus Cryptococcus neoformans, which is commonly found in dirt and bird droppings. The fungus first invades the lungs and spreads to the covering of the brain and spinal cord, causing inflammation. Symptoms include fatigue, fever, headache, nausea, memory loss, confusion, drowsiness, and vomiting. If left untreated, patients with cryptococcal meningitis may lapse into a coma and die.
Cytomegalovirus (CMV) infections can occur concurrently with other infections. Symptoms of CMV encephalitis include weakness in the arms and legs, problems with hearing and balance, altered mental states, dementia, peripheral neuropathy, coma, and retinal disease that may lead to blindness. CMV infection of the spinal cord and nerves can result in weakness in the lower limbs and some paralysis, severe lower back pain, and loss of bladder function. It can also cause pneumonia and gastrointestinal disease. This is rarely seen in HIV-treated individuals since advanced immunity is required for CMV to emerge.
Herpes virus infections are often seen in people with AIDS. The herpes zoster virus, which causes chickenpox and shingles, can infect the brain and produce encephalitis and myelitis (inflammation of the spinal cord). It commonly produces shingles, which is an eruption of blisters and intense pain along an area of skin supplied by an infected nerve. In people exposed to herpes zoster, the virus can lay dormant in the nerve tissue for years until it is reactivated as shingles. This reactivation is common in persons with AIDS because of their weakened immune systems. Signs of shingles include painful blisters (like those seen in chickenpox), itching, tingling, and pain in the nerves.
People with AIDS may suffer from several different forms of neuropathy, or nerve pain, each strongly associated with a specific stage of active immunodeficiency disease. Peripheral neuropathy describes damage to the peripheral nerves, the vast communications network that transmits information between the brain and spinal cord to every other part of the body. Peripheral nerves also send sensory information back to the brain and spinal cord. HIV damages the nerve fibers that help conduct signals and can cause several different forms of neuropathy. Distal sensory polyneuropathy causes either a numbing feeling or a mild to painful burning or tingling sensation that normally begins in the legs and feet. These sensations may be particularly strong at night and may spread to the hands. Affected persons have a heightened sensitivity to pain, touch, or other stimuli. Onset usually occurs in the later stages of the HIV infection and may affect the majority of advanced-stage HIV patients.
Neurosyphilis, the result of an insufficiently treated syphilis infection, seems more frequent and more rapidly progressive in people with HIV infection. It may cause slow degeneration of the nerve cells and nerve fibers that carry sensory information to the brain. Symptoms, which may not appear for some decades after the initial infection and vary from person to person, include weakness, diminished reflexes, unsteady gait, progressive degeneration of the joints, loss of coordination, episodes of intense pain and disturbed sensation, personality changes, dementia, deafness, visual impairment, and impaired response to light. The disease is more frequent in men than in women. Onset is common during mid-life.
Progressive multifocal leukoencephalopathy (PML) primarily affects individuals with suppressed immune systems (including nearly 5 percent of people with AIDS). PML is caused by the JC virus, which travels to the brain, infects multiple sites, and destroys the cells that make myelin – the fatty protective covering for many of the body’s nerve and brain cells. Symptoms include various types of mental deterioration, vision loss, speech disturbances, ataxia (inability to coordinate movements), paralysis, brain lesions, and, ultimately, coma. Some individuals may also have compromised memory and cognition, and seizures may occur. PML is relentlessly progressive and death usually occurs within 6 months of initial symptoms. However, immune reconstitution with highly active antiretroviral therapy allows survival of more than half of HIV-associated PML cases in the current treatment era.
Psychological and neuropsychiatric disorders can occur in different phases of the HIV infection and AIDS and may take various and complex forms. Some illnesses, such as AIDS dementia complex, are caused directly by HIV infection of the brain, while other conditions may be triggered by the drugs used to combat the infection. Individuals may experience anxiety disorder, depressive disorders, increased thoughts of suicide, paranoia, dementia, delirium, cognitive impairment, confusion, hallucinations, behavioral abnormalities, malaise, and acute mania.
Toxoplasma encephalitis, also called cerebral toxoplasmosis, occurs in about 10 percent of untreated AIDS patients. It is caused by the parasite Toxoplasma gondii, which is carried by cats, birds, and other animals and can be found in soil contaminated by cat feces and sometimes in raw or undercooked meat. Once the parasite invades the immune system, it remains there; however, the immune system in a healthy person can fight off the parasite, preventing disease. Symptoms include encephalitis, fever, severe headache that does not respond to treatment, weakness on one side of the body, seizures, lethargy, increased confusion, vision problems, dizziness, problems with speaking and walking, vomiting, and personality changes. Not all patients show signs of the infection. Antibiotic therapy, if used early, will generally control the complication.
Vacuolar myelopathy causes the protective myelin sheath to pull away from nerve cells of the spinal cord, forming small holes called vacuoles in nerve fibers. Symptoms include weak and stiff legs and unsteadiness when walking. Walking becomes more difficult as the disease progresses and many patients eventually require a wheelchair. Some people also develop AIDS dementia. Vacuolar myelopathy may affect up to 30 percent of untreated adults with AIDS and its incidence may be even higher in HIV-infected children.
How are these disorders diagnosed?
Based on the results of the individual's medical history and a general physical exam, the physician will conduct a thorough neurological exam to assess various functions: motor and sensory skills, nerve function, hearing and speech, vision, coordination and balance, mental status, and changes in mood or behavior. The physician may order laboratory tests and one or more of the following procedures to help diagnose neurological complications of AIDS.
Brain imaging can reveal signs of brain inflammation, tumors and CNS lymphomas, nerve damage, internal bleeding or hemorrhage, white matter irregularities, and other brain abnormalities. Several painless imaging procedures are used to help diagnose neurological complications of AIDS.
Computed tomography (also called a CTscan) uses x-rays and a computer to produce two-dimensional images of bone and tissue, including inflammation, certain brain tumors and cysts, brain damage from head injury, and other disorders. It provides more details than an x-ray alone.
Magnetic resonance imaging (MRI) uses a computer, radio waves, and a powerful magnetic field to produce either a detailed three-dimensional picture or a two-dimensional “slice” of body structures, including tissues, organs, bones, and nerves. It does not use ionizing radiation (as does an x-ray) and gives physicians a better look at tissue located near bone.
Functional MRI (fMRI) uses the blood’s magnetic properties to pinpoint areas of the brain that are active and to note how long they stay active. It can assess brain damage from head injury or degenerative disorders such as Alzheimer’s disease and can identify and monitor other neurological disorders, including AIDS dementia complex.
Magnetic resonance spectroscopy (MRS) uses a strong magnetic field to study the biochemical composition and concentration of hydrogen-based molecules, some of which are very specific to nerve cells, in various brain regions. MRS is being used experimentally to identify brain lesions in people with AIDS.
Electromyography, or EMG, is used to diagnose nerve and muscle dysfunction (such as neuropathy and nerve fiber damage caused by the HIV virus) and spinal cord disease. It records spontaneous muscle activity and muscle activity driven by the peripheral nerves.
Biopsy is the removal and examination of tissue from the body. A brain biopsy, which involves the surgical removal of a small piece of the brain or tumor, is used to determine intracranial disorders and tumor type. Unlike most other biopsies, it requires hospitalization. Muscle or nerve biopsies can help diagnose neuromuscular problems, while a brain biopsy can help diagnose a tumor, inflammation, or other irregularity.
Cerebrospinal fluid analysis can detect any bleeding or brain hemorrhage, infections of the brain or spinal cord (such as neurosyphilis), and any harmful buildup of fluid. It can also be used to sample viruses that may be affecting the brain. A sample of the fluid is removed by needle, under local anesthesia, and studied to detect any irregularities.
How are these disorders treated?
No single treatment can cure the neurological complications of AIDS. Some disorders require aggressive therapy while others are treated symptomatically.
Neuropathic pain is often difficult to control. Medicines range from analgesics sold over the counter to antiepileptic drugs, opiates, and some classes of antidepressants. Inflamed tissue can press on nerves, causing pain. Inflammatory and autoimmune conditions leading to neuropathy may be treated with corticosteroids, and procedures such as plasmapheresis (or plasma exchange) can clear the blood of harmful substances that cause inflammation.
Treatment options for AIDS- and HIV-related neuropsychiatric or psychotic disorders include antidepressants and anticonvulsants. Psychostimulants may also improve depressive symptoms and combat lethargy. Antidementia drugs may relieve confusion and slow mental decline, and benzodiazepines may be prescribed to treat anxiety. Psychotherapy may also help some individuals.
Aggressive antiretroviral therapy is used to treat AIDS dementia complex, vacuolar myopathy, progressive multifocal leukoencephalopathy, and cytomegalovirus encephalitis. HAART, or highly active antiretroviral therapy, combines at least three drugs to reduce the amount of virus circulating in the blood and may also delay the start of some infections.
Other neuro-AIDS treatment options include physical therapy and rehabilitation, radiation therapy and/or chemotherapy to kill or shrink cancerous brain tumors that may be caused by the HIV virus, antifungal or antimalarial drugs to combat certain bacterial infections associated with the disorder, and penicillin to treat neurosyphilis.
Amongst several other serious complications as a result of contracting HIV, the lady in orange has severe neuropathy in her feet. The lady in orange... for us a lady without a name yet her face shows how much she is suffering and reveals the fear of not knowing what is happening to her. Thankfully, she's able to receive help but she represents the face of HIV in Africa - a medical situation that doesn't seem to be getting that much better.
The only reason for posting this video is to put our own situations in context and remind ourselves that however much we may be suffering personally... everything is still relative!
It's all a question of what you put your faith in really and as always, if it helps, nobody can criticise you. However, although many people swear by macrobiotic diets, it can't do any harm to speak to your doctor first can it? It doesn't have to be an MD, it can be a qualified homeopathic doctor who may have more knowledge in this area. The point is, that with HIV and neuropathy, you can't afford to take any risks, so make sure that anything you try isn't going to do you any harm and that requires talking to an expert.
Having said all that, the science behind macrobiotic diets may well be sound regarding neuropathy. Carbohydrates and sugar for instance, are associated with nerve damage..read this article from eHow Health (see link below) and see what you think. Read also the author's qualifications (see below), they may have a bearing on your opinion.
Neuropathy Cures Using Macrobiotics
Though neuropathy has no cure, but a macrobiotic diet can alleviate some of the symptoms or slow their progress. Follow a macrobiotic diet to prevent the high intake of carbohydrates that contributes to neuropathy---an often degenerative ailment of the nervous sstem. Stick to small meals at regular intervals for the best results.
Potassium, found in sesame seeds, pumpkin seeds and almonds helps improve nerve function; eat 1 to 2 cups of these foods every week.
Some ointments used to treat neuropathy contain capsaicin, a compound found in red chilis. Eat this plant in powdered form (it's used extensively in Indian cooking ,for example), or mix it with baby powder and apply it topically.
Get plenty of vitamin B-12; eficiencies in this vitamin greatly exacerbate neuropathy by damaging the myelin sheath that protects the nerves. Though you'll find B-12 most commonly in animal products from poultry and eggs to fish and dairy, yin choices include fortified cereals and grains, as well as fortified soy milk. Select whole grains, oat bread or buckwheat, avoiding white flour or processed grains. Shoot for 50 to 100 micrograms per day of vitamin B-12.
Yang Foods
Eat yang foods, or "warm" foods, in small doses. Yang foods include meats, fish, poultry, eggs, hard cheeses, sea salt and sea vegetables, whole grains and legumes. An important source of vitamin B-12, yang foods are also rich in alpha lipoic acid; consuming 50 mg per day of this acid effectively removes glucose from the bloodstream, thus controlling neuropathy. For the best source of alpha lipoic acid, eat organic, lean cuts of red meat. Use sparingly, but consider keeping red meat in your diet.
Other Considerations
Avoid caffeine and sugary drinks, both of which agitate neuropathy. Stick to water, green tea and weak teas made from sticks, dandelions and herbs. Use stevia root and honey as acceptable alternatives to artificial sweeteners and sugar.
John Briggs
Over the course of a 15-year career, John Briggs has written for print and online clients. As a syndicated TV critic, his work appeared in some of the country's top dailies. He has a degree in political science from Temple University and took additional writing classes at NYU.
http://www.ehow.com/way_5683457_neuropathy-cures-using-macrobiotics.html
We know how difficult neuropathy is to treat and that it's virtually impossible to 'cure' but do we always take the necessary measures ourselves to relieve the effects of the disease? This article from the online Physicians' Desk Reference (see link below), more or less sums up what your doctor should advise you about the problem and how to deal with it. It's sensible, makes no exaggerated claims and is a good reference point for people looking for general information. Of course, the many variations in neuropathy will make your case unique and you need to take from it what applies to and is useful to you.
Peripheral Neuropathy Treatment
Taking good care of your feet may relieve your symptoms. As peripheral neuropathy often affects the feet, you can take some simple precautions to alleviate symptoms. Avoid tight-fitting shoes and socks that can aggravate pain and tingling. Instead, choose comfortable, padded shoes and loose, cotton socks. Soaking your feet in cool water for 15 minutes twice a day can alleviate burning foot pain. Examine your feet (and your hands, if they have been affected) daily for wounds and signs of infection.
You can also massage your feet and hands to improve circulation and obtain temporary pain relief.
Walk with a cane or another form of support if neuropathy has affected your balance. Wheelchairs, braces, and splints may help to improve your mobility or enhance your ability to use an extremity that has been affected by nerve damage. If you have a bathtub, you may want to install rails next to it for safety.
Activity can enhance your quality of life if you live with neuropathy. Physical activity such as walking can improve your circulation. It can also help take your mind off of your health problems and reduce your stress level.
Your doctor is the best source of information on the drug treatment choices available to you.
Treatment for peripheral neuropathy may require addressing an underlying cause, such as poorly controlled diabetes, alcoholism, or exposure to toxic substances. If you have been taking medication that triggered neuropathy, your physician may be able to prescribe another drug. Nutritional supplements may be helpful if a poor diet is a factor in your illness. If you are diabetic and you develop peripheral neuropathy, improving your blood sugar control can improve your symptoms of neuropathy.
Your doctor may recommend physical therapy. Physical therapy may help you increase your muscle strength and control, and improve your ability to perform daily activities. The exercises will depend on the type of neuropathy and your symptoms. A physical, occupational, or vocational therapist can suggest ways in which you can adjust your lifestyle to continue your daily activities despite the effects of neuropathy.
Surgery is mainly used to treat a form of peripheral neuropathy in which nerves become swollen from excessive pressure, as in carpal tunnel syndrome. Before surgery for carpal tunnel will be considered, your physician will probably try other strategies to reduce the swelling that causes pressure on the median nerve. You may take a nonsteroidal anti-inflammatory drug such as ibuprofen or naproxen, or wear a splint or brace to keep your wrist from bending. Your doctor also might suggest cortisone injections into the carpal tunnel to reduce inflammation. If these approaches fail to relieve your symptoms, you may need surgery.
Surgery for carpal tunnel syndrome is typically performed under local anesthesia at an outpatient facility. After the anesthesia has taken effect, the doctor (usually an orthopedic or hand surgeon) will make an incision on the inside of the wrist and cut the ligament that forms the roof of the carpal tunnel. This will relieve pressure on the median nerve. The incision is then closed with stitches. Recovery takes about four weeks, during which time you may have to wear a splint.
Surgery may be an option if a tumor or ruptured disc is responsible for the nerve damage. The procedure would involve removing the tumor or repairing the disc.
Acupuncture, massage therapy, chiropractic care, meditation, and various types of movement therapy (including yoga and tai chi) may help to relieve the symptoms of peripheral neuropathy. Other alternative therapies that have been mentioned in connection with neuropathy include magnets, herbs, and vitamins. Little scientific information is available on the effectiveness of most of these approaches. However, acupuncture, a traditional Chinese medical technique, is widely used in many conventional hospitals and physician's offices, and may provide relief from the pain of peripheral neuropathy. Taking B-complex vitamins also could be beneficial, since vitamin deficiency is one of the risk factors for neuropathy. Ask your physician whether vitamins might help you. Talk to your physician if you plan to take herbal supplements, as they may cause harmful interactions with other medications.
The outcome of peripheral neuropathy varies considerably. If a doctor can identify the cause of your condition, and if damage to your nerves is limited, you may make a complete recovery. The recovery time will vary from a few weeks to over a year. In other circumstances, you may face chronic symptoms such as loss of sensation, partial or complete loss of movement, or disability.
Medication and changes in your lifestyle may enable you to cope better with the symptoms of neuropathy; even if a complete recovery is not possible. Research is under way on therapies that may repair or slow the pace of nerve damage.
Since peripheral neuropathy is often a persistent condition, your doctor may need to monitor your status periodically. Call your doctor if your symptoms worsen despite treatment. If your neuropathy has been successfully treated, there should be no need to see a physician unless symptoms recur.
This article by Jane E Brody, from the New York Times, via an Indian newspaper, The Deccan Herald (see link below), is another general description of how neuropathy affects most people but as every article of this sort approaches it from a slightly different angle and uses various different examples and resources, they all add to our knowledge of how the disease works. It's important in all these generalised descriptions of neuropathy to be able to recognise yourself somewhere in them, so while the one may seem less relevant to your situation, the other hits the nail right on the head.
Devastating effects of peripheral neuropathy By Jane E Brody
Damage to one or more of the myriad nerves can cause disabling pain or even paralysis
If you have ever slept on an arm and awakened with a ‘dead’ hand, or sat too long with your legs crossed and had your foot fall asleep, you have some inkling of what many people with peripheral neuropathy experience day in and day out, often with no relief in sight.
And numbness and tingling are hardly the worst symptoms of this highly variable condition, which involves damage to one or more of the myriad nerves outside the brain and spinal cord. Effects may include disabling pain, stinging, swelling, burning, itching, muscle weakness, twitching, loss of sensation, hypersensitivity to touch, lack of coordination, difficulty breathing, digestive disorders, dizziness, impotence, incontinence, and even paralysis and death.
I realise now that I had a mild, reversible bout of peripheral neuropathy several decades ago when a misplaced shot of morphine damaged a sensory nerve in my thigh. It took three years for the nerve to recover, and for much of that time I could not tolerate anything brushing against my leg.
One of my sons, too, was afflicted when a nerve behind his knee was injured during a basketball game. He had no feeling or mobility in his foot for nine months, but after several years the nerve healed and he regained full use of his foot.
And a good friend was nearly paralysed, also temporarily, following a flu shot, by a far more serious form of peripheral neuropathy — an autoimmune affliction called Guillain-Barre syndrome, in which one’s own antibodies attack the myelin sheath that protects nerves throughout the body.
There are hundreds of forms of peripheral neuropathy. A medical guide describing them, compiled by a team of neurologists at the behest of the Neuropathy Association, fills a booklet the size of a two-year wall calendar.
The association, which sponsors research and provides education and support for patients and families dealing with peripheral neuropathy, estimates that the disorder afflicts more than 20 million Americans at any given time. If the cause can be corrected, peripheral nerves can regenerate slowly and patients can recover, although not always completely.
But many people never recover. They must learn to live with the disorder, with the help of treatments and devices that can ease their discomfort and disability. With such a wide array of symptoms and causes, getting a correct diagnosis is often a challenge. Worse, frustrated patients are sometimes told, “It’s all in your head.”
Causes behind ailment
There are three types of peripheral nerves: sensory nerves, which transmit sensations like pain, touch, heat and cold; motor nerves, which control the action of muscles throughout the body; and autonomic nerves, which regulate functions that are not under conscious control, like blood pressure, digestion and heart rate. Symptoms of neuropathy depend on what nerves are involved.
Someone with damaged sensory nerves might not feel heat, for example, and could be scalded by an overly hot bath. Neuropathy of the motor nerves can result in weakness, lack of coordination or paralysis; neuropathy of the autonomic nerves can lead to high blood pressure, irregular heart rate, diarrhea or constipation, impotence and incontinence.
The list of possible causes of neuropathy is far too long for this column. They include inherited conditions like Charcot-Marie-Tooth disease; infections or inflammatory disorders like hepatitis, Lyme disease, AIDS, rheumatoid arthritis and lupus; organ diseases like diabetes, hypothyroidism and kidney disease; exposure to toxic substances like industrial solvents, heavy metals, sniffed glue and some cancer drugs; trauma to or pressure on a nerve from an injury, cast, crutches, abnormal body position, repetitive motion, tumour or abnormal bone growth; alcoholism; and deficiency of vitamin B12.
The most common cause, accounting for nearly a third of neuropathy cases, is diabetes, especially among those whose blood sugar levels are poorly controlled. Half of all people with diabetes eventually begin to lose sensation and develop pain and sometimes weakness in their feet and hands. In people with diabetes, even minor injuries to the feet, if not quickly and properly treated, can result in gangrene and amputations.
In nearly a third of cases, no cause is ever found, leaving patients with no other recourse than treatment of their symptoms.
Suspected cases are best referred to a neurologist, who should begin by taking a complete personal and family medical history and performing a physical and neurological examination, checking on reflexes, muscle strength and tone, sensations, balance and coordination.
A complete workup is likely to include blood tests, urinalysis, a nerve conduction study and electronic measurements of muscle activity. Imaging studies, like a CT scan or an MRI, may reveal a tumour, vertebral damage or abnormal bone growth. In some cases, a nerve or muscle biopsy may be done.
Relief and restoration
If the underlying cause cannot be corrected, the goals of treatment are relief of symptoms and restoration of lost functions. Pain control is paramount. Effective relief may come from over-the-counter remedies or a lidocaine patch but sometimes requires prescribed opiates.
Many with neuropathic pain have benefited from drugs licensed for other uses, including antiseizure medications like gabapentin, topiramate (Topamax) and pregabalin (Lyrica) and antidepressants like the tricyclic amitriptyline and the selective serotonin and norepinephrine reuptake inhibitor duloxetine (Cymbalta). Vitamin B12 deficiency can be treated with supplements and fortified cereals or by judicious consumption of meats, poultry, fish, eggs and dairy products.
And since alcohol and tobacco are particularly risky for people with neuropathy, or a health problem that predisposes them to it, they have every reason to quit smoking and to drink only in moderation.
Many patients are helped by physical therapy, occupational therapy and devices like braces, splints and wheelchairs. Railings on stairways and in the bathroom, elimination of tripping hazards like scatter rugs, and improved lighting (including night-lights) can reduce the risk of falls. For those insensitive to heat, a thermometer should be used to test water in a tub, shower or sink. Orthopedic shoes are invaluable to patients with lost sensitivity in their feet or impaired balance.
A variety of mechanical aids can make it easier to live with peripheral neuropathy, among them kitchen tools made by Oxo. Those with digestive problems might try eating small frequent meals and sleeping with their heads elevated.
Other helpful sources include the book ‘Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop’ (‘Demos Health’, 2006), by Dr Norman Latov. The association maintains a list of support groups and of centres that specialise in diagnosing and treating neuropathy.
