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Showing posts with label chronic pain. Show all posts
Showing posts with label chronic pain. Show all posts
Monday, October 19, 2009
Wednesday, September 2, 2009
Meeting with Congresswoman Mary Bono Mack's staff
I was able to meet with Mr. Marc Troast the District Director for Congresswoman Mary Bono Mack. It is my Hope and prayer that we can work together to help those suffering from the pain of peripheral neuropathy in its most cruel forms, that they may find help and Hope (in motion).
Monday, August 3, 2009
Advocacy groups push for passage of Medicare Patient IVIg Access Act of 2009
Get Involved!
Anyone can be an advocate—it is easy and important. IVIG is so important to so many people, but most members of Congress do not realize how many people rely on IVIG for their health. You can change that. You can tell them how much IVIG means to your health or to your loved one’s health.
A bill has been introduced in the House of Representatives and also in the Senate to help solve the problems many Medicare beneficiaries have getting IVIG where it is best for them: the physician’s office, the home or the hospital outpatient infusion center. These bills will not become law unless Congress hears from people like you all across the country. (Note: Congress often writes laws like this for Medicare beneficiaries because the federal government pays for Medicare. However, private insurance companies often follow Medicare policy, so these bills, if passed, can help the entire IVIG community.)
It takes just a few minutes to take action. First, click on the link below to find the three members of Congress who serve you: your one representative in the House and your two Senators. Then, after reviewing the material about the bills written to solve the problems for Medicare patients on IVIG, send an email to your members of Congress.
Thank you for your efforts!
Anyone can be an advocate—it is easy and important. IVIG is so important to so many people, but most members of Congress do not realize how many people rely on IVIG for their health. You can change that. You can tell them how much IVIG means to your health or to your loved one’s health.
A bill has been introduced in the House of Representatives and also in the Senate to help solve the problems many Medicare beneficiaries have getting IVIG where it is best for them: the physician’s office, the home or the hospital outpatient infusion center. These bills will not become law unless Congress hears from people like you all across the country. (Note: Congress often writes laws like this for Medicare beneficiaries because the federal government pays for Medicare. However, private insurance companies often follow Medicare policy, so these bills, if passed, can help the entire IVIG community.)
It takes just a few minutes to take action. First, click on the link below to find the three members of Congress who serve you: your one representative in the House and your two Senators. Then, after reviewing the material about the bills written to solve the problems for Medicare patients on IVIG, send an email to your members of Congress.
Thank you for your efforts!
Saturday, March 21, 2009
Medical Marijuana study results for Neuropathic Pain
Medicinal Marijuana Effective For Neuropathic Pain In HIV, Study Finds
ScienceDaily (2008-08-07) -- In a double-blind, placebo-controlled clinical trial to assess the impact of smoked medical cannabis, or marijuana, on the neuropathic pain associated with HIV, researchers have found that reported pain relief was greater with cannabis than with a placebo. ... > read full article
Saturday, March 14, 2009
New Symptoms-Not Good!
I was just getting ready to lay back down and think about my new symptoms that started at day break Monday March 9th, 2009.
Then I thought, mmmmmmmm (thinking)mmmmmmm. I have only shared this with my Mother, Father and the doctors and nurses at Desert Regional Hospital on Wednesday March 11th, 2009.
I awoke and instantly said to myself, Ut Oh..that is not good.
My right hand, fingers, wrist, arm and shoulder were tingling, (burning which is normal for me) and limp. I could not grasp and hold my tooth brush (i'm right handed).
I could not raise my arm above my elbow. This was not right at all and I got scared. That is why I didn't go to the hospital until Wednesday, two day later. I did not contact my neurologist yet. He is about 50 miles away.
The hospital did blood work, MRI etc., etc. and nothing. The emeregency doctor said it's neurological but he couldn't put his finger on it and tell me for sure what had happen. I went to my support group yesterday and did not share this new problemo. Stupid for me but I am very uneasy about this and I'm not sure If I can handle more bad news. So, I'm sharing now. I called my neuro tho'yesterday and left a message with the nurse. I will be right on it Monday AM.
Please keep me in your prayers.
God Bless and Thank you for reading and listening to me.
David
Then I thought, mmmmmmmm (thinking)mmmmmmm. I have only shared this with my Mother, Father and the doctors and nurses at Desert Regional Hospital on Wednesday March 11th, 2009.
I awoke and instantly said to myself, Ut Oh..that is not good.
My right hand, fingers, wrist, arm and shoulder were tingling, (burning which is normal for me) and limp. I could not grasp and hold my tooth brush (i'm right handed).
I could not raise my arm above my elbow. This was not right at all and I got scared. That is why I didn't go to the hospital until Wednesday, two day later. I did not contact my neurologist yet. He is about 50 miles away.
The hospital did blood work, MRI etc., etc. and nothing. The emeregency doctor said it's neurological but he couldn't put his finger on it and tell me for sure what had happen. I went to my support group yesterday and did not share this new problemo. Stupid for me but I am very uneasy about this and I'm not sure If I can handle more bad news. So, I'm sharing now. I called my neuro tho'yesterday and left a message with the nurse. I will be right on it Monday AM.
Please keep me in your prayers.
God Bless and Thank you for reading and listening to me.
David
Wednesday, January 28, 2009
Mankoski Pain Scale-FYI
Mankoski Pain Scale
Mankoski Pain ScaleCopyright © 1995, 1996, 1997 Andrea Mankoski. All rights reserved. Right to copy with attribution freely granted.
0-- Pain Free No medication needed.
1-- Very minor annoyance - occasional minor twinges. No medication needed.
2-- Minor annoyance - occasional strong twinges. No medication needed.
3-- Annoying enough to be distracting. Mild painkillers are effective. (Aspirin, Ibuprofen.)
4 --Can be ignored if you are really involved in your work, but still distracting. Mild painkillers relieve pain for 3-4 hours.
5-- Can't be ignored for more than 30 minutes. Mild painkillers reduce pain for 3-4 hours.
6-- Can't be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, Vicodin) reduce pain for 3-4 hours.
7-- Makes it difficult to concentrate, interferes with sleep You can still function with effort. Stronger painkillers are only partially effective. Strongest painkillers relieve pain (Oxycontin, Morphine)
8-- Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain. Stronger painkillers are minimally effective. Strongest painkillers reduce pain for 3-4 hours.
9-- Unable to speak. Crying out or moaning uncontrollably - near delirium. Strongest painkillers are only partially effective.
10-- Unconscious. Pain makes you pass out. Strongest painkillers are only partially effective.
Mankoski Pain ScaleCopyright © 1995, 1996, 1997 Andrea Mankoski. All rights reserved. Right to copy with attribution freely granted.
0-- Pain Free No medication needed.
1-- Very minor annoyance - occasional minor twinges. No medication needed.
2-- Minor annoyance - occasional strong twinges. No medication needed.
3-- Annoying enough to be distracting. Mild painkillers are effective. (Aspirin, Ibuprofen.)
4 --Can be ignored if you are really involved in your work, but still distracting. Mild painkillers relieve pain for 3-4 hours.
5-- Can't be ignored for more than 30 minutes. Mild painkillers reduce pain for 3-4 hours.
6-- Can't be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, Vicodin) reduce pain for 3-4 hours.
7-- Makes it difficult to concentrate, interferes with sleep You can still function with effort. Stronger painkillers are only partially effective. Strongest painkillers relieve pain (Oxycontin, Morphine)
8-- Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain. Stronger painkillers are minimally effective. Strongest painkillers reduce pain for 3-4 hours.
9-- Unable to speak. Crying out or moaning uncontrollably - near delirium. Strongest painkillers are only partially effective.
10-- Unconscious. Pain makes you pass out. Strongest painkillers are only partially effective.
Research grants from the Neuropathy Association
Scientific Research Grants Announced for a Better Understanding of Autoimmune and Chemotherapy-Induced Neuropathies
New York, NY (10/31/08) The Neuropathy Association today announced two awardees for its annual Scientific Research Grants Program.
The Neuropathy Association, a nonprofit organization, was established in 1995 by people with neuropathy and their families and friends to help those who suffer from disorders affecting the peripheral nervous system. Now, a national organization--headquartered in New York City--with over 50,000 members and supporters, the Association’s on-going mission is to provide patient support and education, facilitate information exchange, advocate for patients’ interests and, most importantly, encourage and fund critical neuropathy research.
Every year, The Neuropathy Association awards two scientific research grants. Each grant awards $80,000 allocated at $40,000 per year for a two year period. This year’s grant recipients--Gary J. Bennett, Ph.D. of McGill University in Quebec, Canada and Hélène Bour-Jordan, Ph.D. and co-principal investigator, Mark S. Anderson, M.D., Ph.D. of the University of California, San Francisco Diabetes Center--were chosen from eleven research applicants working in the field of neuropathy research at prominent medical institutions across the U.S. and Canada.
Dr. Bennett’s proposal, Mechanism of Paclitaxel-Evoked Peripheral Neuropathy, is based on data suggesting that paclitaxel (Taxol®) causes neuropathy by a novel and previously unrecognized mechanism. It pursues the hypothesis that dysfunction of axonal mitochondria leads to the resulting peripheral neuropathy. Paclitaxel is used by tens of thousands of patients as a first-line drug in the treatment of ovarian, breast and non-small cell lung cancer.
Chemotherapy-induced peripheral neuropathy describes neurotoxic injury to the peripheral nervous system caused by several chemotherapeutic agents belonging to the taxane, vinca alkaloid and platinum-complex classes. Neuropathy is a serious side-effect of paclitaxel; for patients who develop neuropathy resulting from paclitaxel, the neuropathy can be severe—and often painful—thus preventing or limiting the use of paclitaxel as an effective chemotherapeutic agent and leading to a decline in the patient’s quality of life. Understanding the pathophysiology of paclitaxel-induced neuropathy will improve our understanding of other toxin-induced neuropathies, and, possibly, lead to the development of drugs that prevent the nerve degeneration and neuropathy.
According to Dr. Bennett, “Knowing how paclitaxel causes peripheral neuropathy will potentially help us prevent and/or control it. Preventing and controlling the neuropathy resulting from paclitaxel will, in turn, allow us to administer larger doses to more effectively kill cancer cells and save lives. We are optimistic that the research supported by this grant from The Neuropathy Association will help us understand and solve this problem.”
Drs. Jordan and Anderson—co-investigators on the proposal Identification of Neural Autoantigens in Autoimmune Peripheral Neuropathy—hope to investigate the immunopathology of autoimmune peripheral neuropathies. In particular, they propose to identify proteins of the peripheral nervous system (PNS) that are targeted by the immune system in autoimmune neuropathy.
Autoimmune diseases develop when the immune system malfunctions and attacks the body and itself. Chronic inflammatory demyelinating polyneuropathy (CIDP) and Guillain-Barré syndrome (GBS) are autoimmune types of neuropathy. CIDP is an autoimmune disorder of the peripheral nervous system characterized by progressive weakness and impaired sensory function in the arms and legs. It is caused by damage to the myelin sheath (the insulation surrounding the peripheral nerves). Whereas CIDP is chronic, GBS is an acute autoimmune neuropathy with the body’s immune system directly attacking the peripheral nervous system. It is usually triggered by or follows a specific event disrupting the immune system such as an infection, surgery, trauma or vaccination. Identification of PNS autoantigens targeted in CIDP and GBS patients could potentially advance the understanding of pathogenic mechanisms and evaluate disease evolution and response to therapy. The identification of autoantigens could also one day lead to novel therapeutic strategies in GBS and CIDP.
Dr. Jordan explains, “This grant enables us to determine antigens of the peripheral nervous system targeted by autoantibodies and examine immune responses to these autoantigens. Autoantibodies in tissue-specific autoimmune diseases are excellent indicators of disease and are instrumental in identifying major autoantigens that are now used in clinical trials in several autoimmune disorders, including type1diabetes, multiple sclerosis and rheumatoid arthritis.”
Each grantee is awarded $80,000 over a period of two years. After their initial grant of $40,000, the grant award recipients will receive a continuing grant award for an additional $40,000 from the Association upon receipt of a constructive progress report at the end of the first year. The Association’s current continuing grant initiatives include:
Efficacy of Surgical Decompression of Lower Extremity Nerves in Patients with Painful Peripheral NeuropathyVinay Chaudhry, M.D., F.R.C.P.Johns Hopkins University
Activation of Signaling Pathways in Inherited NeuropathiesJames L. Salzer, M.D., Ph.D. New York University
Development of High-Throughput Drug Screening for HIV NeuropathyAhmet Höke, M.D., Ph.D., F.R.C.P.Johns Hopkins University
Sphingolipid Synthesis and NeuropathyRobert H. Brown, Jr., M.D., Ph.D.Massachusetts General Hospital
Ronnie Chalif, the Association’s president affirms, “Finding answers and a cure for neuropathy requires that we build upon our strategic research initiatives. We are rallying in the face of current neuropathy research trends and continue to invest in a cure.” To date, The Neuropathy Association has awarded more than $750,000 in research grants since the launch of its Neuropathy Research Grants Program in 1998.
About Peripheral Neuropathy:
Peripheral neuropathy is one of the most common diseases, affecting upwards of 20 million Americans. It results from injury to the peripheral nerves, disrupting the body's ability to communicate with its muscles, organs and tissues. Early warning signs include weakness, numbness, tingling and pain, especially in the hands and feet. If ignored, the symptoms can range from loss of sensation at one extreme to unremitting pain at the other. However, if neuropathy's symptoms are recognized and diagnosed early, it can often be controlled. One third of all neuropathy patients have diabetes. (Of the entire diabetic population, more than 50 percent will develop some form of diabetic neuropathy.) Approximately 30 percent of neuropathies are "idiopathic," or of an unknown cause. A third of neuropathy cases include a range of causes including autoimmune disorders, tumors, heredity, nutritional imbalances, infections, and toxins. Neuropathy's progression can be variable: it can come on suddenly, or it can progress slowly over the years. Some neuropathies are mild, and others can be debilitating. If diagnosed early, it can often be controlled and some types can be cured. Too often neuropathy is discovered after it has caused irreparable harm. Neuropathy can occur at any age, but is more frequent among older adults.
About UCSF Diabetes Center:
For more than half a century, researchers at UCSF have been at the center of major developments in diabetes treatment and care. From the discovery of genes thought to play an important role in the development of diabetes to the first clinical tests of human insulin that has brought relief to millions, UCSF's history of innovation is recognized across the globe. Today, the Diabetes Center has one singular mission: to bring lasting improvements in quality of life to individuals with type 1 and type 2 diabetes. This common goal unites the clinical, education and research arms of the Diabetes Center into a comprehensive program that is unique among diabetes facilities. http://www.diabetes.ucsf.edu/
About McGill University:
McGill University, founded in Montreal, Quebec in 1821, is Canada’s leading post-secondary institution. It has two campuses, 11 faculties, 10 professional schools, 300 programs of study and more than 33,000 students. Since 2000, more than 800 professors have been recruited to McGill to share their energy, ideas and cutting-edge research. McGill attracts students from more than 160 countries around the world. Almost half of McGill students claim a first language other than English including 6,000 francophones with more than 6,200 international students making up almost 20 per cent of the student body.
About The Neuropathy Association Established in 1995, The Neuropathy Association is the leading national patient-based nonprofit organization whose mission is to provide patient support and education, advocate for patient's interests, and promote research into the causes of and cures for peripheral neuropathies. With more than 50,000 members and supporters and over 130 support groups, the organization works to connect patients with one another through its active network of members, regional chapters, Association-designated neuropathy centers and support groups. Currently, it has a network of 12 Association-designated neuropathy centers at major university hospitals across the U.S. serving patients with neuropathy and conducting research. For more information about peripheral neuropathy, The Neuropathy Association or the Association’s annual Scientific Research Grant Program, please visit http://www.neuropathy.org.
New York, NY (10/31/08) The Neuropathy Association today announced two awardees for its annual Scientific Research Grants Program.
The Neuropathy Association, a nonprofit organization, was established in 1995 by people with neuropathy and their families and friends to help those who suffer from disorders affecting the peripheral nervous system. Now, a national organization--headquartered in New York City--with over 50,000 members and supporters, the Association’s on-going mission is to provide patient support and education, facilitate information exchange, advocate for patients’ interests and, most importantly, encourage and fund critical neuropathy research.
Every year, The Neuropathy Association awards two scientific research grants. Each grant awards $80,000 allocated at $40,000 per year for a two year period. This year’s grant recipients--Gary J. Bennett, Ph.D. of McGill University in Quebec, Canada and Hélène Bour-Jordan, Ph.D. and co-principal investigator, Mark S. Anderson, M.D., Ph.D. of the University of California, San Francisco Diabetes Center--were chosen from eleven research applicants working in the field of neuropathy research at prominent medical institutions across the U.S. and Canada.
Dr. Bennett’s proposal, Mechanism of Paclitaxel-Evoked Peripheral Neuropathy, is based on data suggesting that paclitaxel (Taxol®) causes neuropathy by a novel and previously unrecognized mechanism. It pursues the hypothesis that dysfunction of axonal mitochondria leads to the resulting peripheral neuropathy. Paclitaxel is used by tens of thousands of patients as a first-line drug in the treatment of ovarian, breast and non-small cell lung cancer.
Chemotherapy-induced peripheral neuropathy describes neurotoxic injury to the peripheral nervous system caused by several chemotherapeutic agents belonging to the taxane, vinca alkaloid and platinum-complex classes. Neuropathy is a serious side-effect of paclitaxel; for patients who develop neuropathy resulting from paclitaxel, the neuropathy can be severe—and often painful—thus preventing or limiting the use of paclitaxel as an effective chemotherapeutic agent and leading to a decline in the patient’s quality of life. Understanding the pathophysiology of paclitaxel-induced neuropathy will improve our understanding of other toxin-induced neuropathies, and, possibly, lead to the development of drugs that prevent the nerve degeneration and neuropathy.
According to Dr. Bennett, “Knowing how paclitaxel causes peripheral neuropathy will potentially help us prevent and/or control it. Preventing and controlling the neuropathy resulting from paclitaxel will, in turn, allow us to administer larger doses to more effectively kill cancer cells and save lives. We are optimistic that the research supported by this grant from The Neuropathy Association will help us understand and solve this problem.”
Drs. Jordan and Anderson—co-investigators on the proposal Identification of Neural Autoantigens in Autoimmune Peripheral Neuropathy—hope to investigate the immunopathology of autoimmune peripheral neuropathies. In particular, they propose to identify proteins of the peripheral nervous system (PNS) that are targeted by the immune system in autoimmune neuropathy.
Autoimmune diseases develop when the immune system malfunctions and attacks the body and itself. Chronic inflammatory demyelinating polyneuropathy (CIDP) and Guillain-Barré syndrome (GBS) are autoimmune types of neuropathy. CIDP is an autoimmune disorder of the peripheral nervous system characterized by progressive weakness and impaired sensory function in the arms and legs. It is caused by damage to the myelin sheath (the insulation surrounding the peripheral nerves). Whereas CIDP is chronic, GBS is an acute autoimmune neuropathy with the body’s immune system directly attacking the peripheral nervous system. It is usually triggered by or follows a specific event disrupting the immune system such as an infection, surgery, trauma or vaccination. Identification of PNS autoantigens targeted in CIDP and GBS patients could potentially advance the understanding of pathogenic mechanisms and evaluate disease evolution and response to therapy. The identification of autoantigens could also one day lead to novel therapeutic strategies in GBS and CIDP.
Dr. Jordan explains, “This grant enables us to determine antigens of the peripheral nervous system targeted by autoantibodies and examine immune responses to these autoantigens. Autoantibodies in tissue-specific autoimmune diseases are excellent indicators of disease and are instrumental in identifying major autoantigens that are now used in clinical trials in several autoimmune disorders, including type1diabetes, multiple sclerosis and rheumatoid arthritis.”
Each grantee is awarded $80,000 over a period of two years. After their initial grant of $40,000, the grant award recipients will receive a continuing grant award for an additional $40,000 from the Association upon receipt of a constructive progress report at the end of the first year. The Association’s current continuing grant initiatives include:
Efficacy of Surgical Decompression of Lower Extremity Nerves in Patients with Painful Peripheral NeuropathyVinay Chaudhry, M.D., F.R.C.P.Johns Hopkins University
Activation of Signaling Pathways in Inherited NeuropathiesJames L. Salzer, M.D., Ph.D. New York University
Development of High-Throughput Drug Screening for HIV NeuropathyAhmet Höke, M.D., Ph.D., F.R.C.P.Johns Hopkins University
Sphingolipid Synthesis and NeuropathyRobert H. Brown, Jr., M.D., Ph.D.Massachusetts General Hospital
Ronnie Chalif, the Association’s president affirms, “Finding answers and a cure for neuropathy requires that we build upon our strategic research initiatives. We are rallying in the face of current neuropathy research trends and continue to invest in a cure.” To date, The Neuropathy Association has awarded more than $750,000 in research grants since the launch of its Neuropathy Research Grants Program in 1998.
About Peripheral Neuropathy:
Peripheral neuropathy is one of the most common diseases, affecting upwards of 20 million Americans. It results from injury to the peripheral nerves, disrupting the body's ability to communicate with its muscles, organs and tissues. Early warning signs include weakness, numbness, tingling and pain, especially in the hands and feet. If ignored, the symptoms can range from loss of sensation at one extreme to unremitting pain at the other. However, if neuropathy's symptoms are recognized and diagnosed early, it can often be controlled. One third of all neuropathy patients have diabetes. (Of the entire diabetic population, more than 50 percent will develop some form of diabetic neuropathy.) Approximately 30 percent of neuropathies are "idiopathic," or of an unknown cause. A third of neuropathy cases include a range of causes including autoimmune disorders, tumors, heredity, nutritional imbalances, infections, and toxins. Neuropathy's progression can be variable: it can come on suddenly, or it can progress slowly over the years. Some neuropathies are mild, and others can be debilitating. If diagnosed early, it can often be controlled and some types can be cured. Too often neuropathy is discovered after it has caused irreparable harm. Neuropathy can occur at any age, but is more frequent among older adults.
About UCSF Diabetes Center:
For more than half a century, researchers at UCSF have been at the center of major developments in diabetes treatment and care. From the discovery of genes thought to play an important role in the development of diabetes to the first clinical tests of human insulin that has brought relief to millions, UCSF's history of innovation is recognized across the globe. Today, the Diabetes Center has one singular mission: to bring lasting improvements in quality of life to individuals with type 1 and type 2 diabetes. This common goal unites the clinical, education and research arms of the Diabetes Center into a comprehensive program that is unique among diabetes facilities. http://www.diabetes.ucsf.edu/
About McGill University:
McGill University, founded in Montreal, Quebec in 1821, is Canada’s leading post-secondary institution. It has two campuses, 11 faculties, 10 professional schools, 300 programs of study and more than 33,000 students. Since 2000, more than 800 professors have been recruited to McGill to share their energy, ideas and cutting-edge research. McGill attracts students from more than 160 countries around the world. Almost half of McGill students claim a first language other than English including 6,000 francophones with more than 6,200 international students making up almost 20 per cent of the student body.
About The Neuropathy Association Established in 1995, The Neuropathy Association is the leading national patient-based nonprofit organization whose mission is to provide patient support and education, advocate for patient's interests, and promote research into the causes of and cures for peripheral neuropathies. With more than 50,000 members and supporters and over 130 support groups, the organization works to connect patients with one another through its active network of members, regional chapters, Association-designated neuropathy centers and support groups. Currently, it has a network of 12 Association-designated neuropathy centers at major university hospitals across the U.S. serving patients with neuropathy and conducting research. For more information about peripheral neuropathy, The Neuropathy Association or the Association’s annual Scientific Research Grant Program, please visit http://www.neuropathy.org.
Tuesday, January 13, 2009
A Long edition on Chronic Inflmmtory Demyelinating Polyradiculoneuropathy
Chronic Inflammatory Demyelinating Polyradiculoneuropathy
Introduction
This document has been written for patients who have been told that they may have CIDP (chronic inflammatory demyelinating poly[radiculo*]neuropathy), and for their relatives and friends. It aims to explain accurately and honestly what CIDP is, and hopefully will answer some of the questions you may have. If you do not understand or are worried by any of the information offered here, do ask your doctor to explain.
*'Radiculo' is sometimes omitted.
The degree of severity of CIDP and the way in which it affects people vary enormously from one sufferer to another. There is no typical CIDP. Therefore one general description and one certain prognosis are not possible. This booklet describes symptoms which are common among sufferers.
What is CIDP?
CIDP is defined thus:
• 'chronic' refers to the gradual course of the illness;
• 'inflammatory' means there is strong evidence that it is inflammation that causes the nerve damage;
• 'demyelinating' means that the damage is primarily to the insulating myelin sheaths around the nerve fibres; and
• 'poly[radiculo]neuropathy'; 'poly' means many, ['radiculo' means root,] 'neuro' means nerve and 'opathy' means disease; so poly[radiculo]neuro-pathy means a disease of many peripheral nerves [and their roots (which are the points of origin of the peripheral nerves from the spinal cord)].
CIDP is a very rare disease of the peripheral nervous system involving gradual development of weakness and loss of sensation predominantly in the arms and legs.
The incidence and prevalence of CIDP are very difficult to determine because of its rarity. Various estimates put the incidence at between 75 and 250 people per year in the UK.
The disease may start at any age, but is slightly more common in young adults. It is more common in men than women. For women, relapses are slightly more likely to occur during a pregnancy year. It is not hereditary; ie it is not passed on to children. It is not infectious; ie it is not caught from, or transmitted to, anybody else. It is not a psychiatric or `nervous' disorder.
No-one is sure what causes CIDP. Current research is investigating the role of preceding infections, immunisations and other events before the onset or relapses of CIDP. However, to date there is no general agreement on what causes the disease.
Symptoms
The severity of CIDP is extremely variable and the symptoms experienced vary considerably between patients. Initial symptoms may be vague and confusing to both the patient and the doctor. Subjective symptoms such as fatigue and sensory disturbance are difficult to communicate. In the early stages it may be difficult for the patient to persuade the doctor that there is anything physically wrong.
Early symptoms usually include either tingling (pins and needles) or loss of feeling (numbness) beginning in the toes and fingers, or weakness, so that legs feel heavy and wooden, arms feel limp and hands cannot grip or turn things properly. These symptoms may remain mild and result in only minor disruption the patient's normal life. Alternatively they may become progressively and gradually worse over a period of several weeks, months or even years sometimes, but very rarely, to the extent that the patient is bed bound with profound weakness of the arms.
CIDP usually presents with both weakness and sensory symptoms, sometimes with weakness alone, and rarely with sensory symptoms alone. The arms and legs are usually affected together, the legs more than the arms. Prickling and tingling sensations in the extremities are common and may be painful. Aching pain in the muscles also occurs. Tendon reflexes are usually lost. As the disease becomes more severe, a tremor may develop, usually in the upper limbs. Very rarely patients may develop facial weakness.
Diagnosis
CIDP can be difficult to diagnose as there is no conclusive diagnostic test for it. The history of symptoms is often vague with varying signs which could be symptoms of a number of conditions. Therefore a long period of time may elapse before a suggestion of CIDP is made.
CIDP is closely related to Guillain-Barré syndrome (GBS), which is also due to inflammation of the peripheral nerves. Symptoms experienced by patients are similar, but GBS is a more acute condition in which symptoms appear rapidly over a period of days or a few weeks. GBS patients usually make a spontaneous recovery over a period of weeks or months.
CIDP is a chronic condition and is only distinguished from GBS by virtue of its pattern of progression. In GBS the low point is reached within four weeks whereas in CIDP the initial progressive phase lasts longer, usually much longer. Some CIDP patients are initially diagnosed as having GBS. Only when the deterioration continues over an extended period, or when one or more relapse(s) occur after a period of improvement, is the illness reclassified as CIDP.
The diagnosis is made primarily on clinical grounds, not laboratory tests. This means that the doctor has to rely on the history and clinical examination fitting into the pattern of CIDP. The doctor will particularly want to know of any recent possible toxin exposure (insecticides, solvents), medication, alcohol intake, tick bites, family history of nerve disease, or symptoms of any coincidental illnesses, such as diabetes (thirst, frequent urination, weight loss) or arthritis (painful joints). Any of these might lead to a different diagnosis.
Essential criteria for a positive diagnosis of CIDP are:
• progressive weakness in two or more limbs due to a poly[radiculo]neuropathy;
• loss or diminution of tendon reflexes;
• progression for more than eight weeks or recurrence or relapse; and
• evidence of damage to peripheral nerve myelin from nerve conduction tests.
Investigations will include blood tests, usually a lumbar puncture and nerve conduction tests with an electromyogram (EMG) machine, and possibly a Magnetic Resonance Image (MRI) scan. A nerve biopsy may also be performed. In cases where CIDP is associated with an abnormal protein in the blood (Paraproteinaemia) a bone marrow examination and X-rays of the bones may be required.
The lumbar puncture involves lying on one side and having a needle inserted under local anaesthesia between the vertebrae into the sac of cerebrospinal fluid which surrounds the nerve roots. The idea is worse than the procedure really is and it does not usually hurt. The cerebrospinal fluid often contains much more protein than usual while the cell content remains normal. If different changes are found the doctor has to review the diagnosis with even more care.
The EMG is an electrical recording of the muscle activity. If a nerve is stimulated with a brief electrical pulse (felt like a sharp tap or jolt) muscle activity can be recorded and the speed of nerve conduction worked out. Usually in CIDP nerve conduction is markedly slowed or even blocked. The test lasts about half an hour. It is only slightly uncomfortable and quite harmless.
The Magnetic Resonance Image (MRI) Scanner is a more recent diagnostic tool and takes X-ray type pictures of the brain and spinal cord (ie of the central nervous system). The procedure involves the patient's upper body being slid into the tunnel-like scanner and remaining absolutely still during the scanning process which lasts about half an hour. It is entirely painless. MRI scans are used to eliminate the possibility of damage to the central nervous system.
Sometimes a nerve biopsy may also be performed. This involves a small piece of nerve being removed, usually from the side of the heel of the foot, to be examined in the laboratory. This allows the doctor to see any inflammation and the type of nerve damage. Having the biopsy is not painful because local anaesthetic is used, but the skin below may become sore for a week or two afterwards. The patient may be left with some loss of sensation in a very small area on the side of the foot.
Progression
It is helpful to subdivide CIDP into four sub-categories which are characterised by the pattern of progression of the disease. These are:
• 'subacute' where symptoms continue to progress and worsen for at least four weeks, but not more than eight weeks before levelling off or improving;
• 'chronic progressive' where symptoms continue to progress and worsen for a period exceeding eight weeks;
• 'chronic relapsing' where there is more than one episode in which symptoms progress and worsen for a period greater than four weeks; and
• 'recurrent GBS' where each bout has a progressive phase of less than four weeks.
Clearly the cutoff points used are somewhat arbitrary.
The most common form of the disease is the chronic relapsing form largely due to the beneficial effects of treatment but sometimes due to spontaneous remissions. About 80% of patients have this form of the disease. About 10% of patients have the subacute disease which plateaus and then disappears spontaneously. Patients with recurrent GBS form only a small percentage of CIDP patients.
Thus some patients only have a single 'bout' of CIDP lasting for several months or years, after which a spontaneous recovery may be made. Others have many bouts in between which spontaneous remission and recovery occurs. After each bout patients may be left with some residual numbness and weakness and sometimes discomfort. For many this will not seriously interfere with their lives, and they are able to continue with or resume their normal occupation. However a very small number are left severely disabled and may be dependent on a wheelchair or even bed bound. There are only a very unfortunate few for whom the disease continues to progress without remission.
What is going on?
The function of the brain is to interpret sensations and initiate movements and other responses. This activity depends on a complex communication system of nerves running to every part of the body via the spinal cord. Each nerve in this communication system can be compared to an electric cable. The inner part of the nerve, the axon, is made of conductive tissue and carries messages or impulses throughout the body like the wires in an electric cable. The axon is surrounded by a layer of fatty substance, the myelin sheath, like the insulating cover on a cable. The myelin helps the conduction of messages along the nerves as well as insulating and protecting the nerve.
The symptoms of CIDP are due to inflammation and damage to the peripheral nerves and their roots. The peripheral nerves connect the central nervous system to the skin and muscle. CIDP is probably an autoimmune disease, ie one in which the immune system attacks its own body. The most likely mechanism is that the immune cells, called lymphocytes, somehow or other make a mistake and attack the nerves. The main part of the nerve which is attacked is the insulating sheath, or myelin.
The way in which the lymphocytes are tricked into attacking the body is still the subject of research. The lymphocytes may cause the formation of chemicals called antibodies which circulate in the blood and damage the myelin. Attempts to identify these antibodies have so far been only partially successful.
Fortunately the myelin sheath can be replaced within a few weeks or months by the myelin-forming cells, named Schwann cells. If the nerve axons are damaged these can also regrow, but this is much slower. Research is continuing into the underlying causes and mechanisms of the disease.
Treatment
Treatment of CIDP is usually very effective with about 80% of new cases making a dramatic response to therapy, although there is no one shot curative treatment in the way that antibiotics might cure an infection. Drug treatments are generally thought to work by suppressing the autoimmune response. This in turn reduces the disabling symptoms of the disease. Examples are steroids, immunosuppressive drugs, plasma exchange and intravenous immunoglobulin.
Obviously suppressing the immune response cannot be undertaken lightly because it runs the risk of suppressing normal immune responses to infections. The decision whether to try these treatments has to be tailored by the doctor to the individual needs of each patient. However it is reassuring to know that treatments are available, that demyelinated nerves can repair themselves, and that some patients get better without treatment.
Because of the small number of patients and because most of the treatment methods are quite new, there is limited evidence available of the relative effectiveness of different treatments. Some patients respond to one method of treatment and not to others. There are only a very unfortunate few who cannot be helped by any of these treatments.
Steroids
Controlled trials have demonstrated that steroids are beneficial in CIDP. A wide range of dosage schedules has been used and no work has been addressed to the question of which is best.
The high risks of serious side effects resulting from the prolonged use of high dose steroids are well known. These include osteoporosis (thinning of bones), cataracts, diabetes, hypertension (raised blood pressure), obesity and myopathy (muscle weakness).
If the dosage levels required to control the CIDP appear unacceptably high or unacceptably prolonged, it may be suggested that other immunosuppressive drugs are used.
Immunosuppressive drugs
Clinical experience suggests that immunosuppressive drugs help. These include azathioprine, cyclophosphamide and cyclosporin. Azathioprine is the most widely used in the treatment of CIDP.
The use of these drugs carries the theoretical side effect of increased risk of developing cancer, but in practice this increased risk is very small.
Plasma exchange
Plasma exchange involves the patient being connected to a machine which can separate the blood cells from the fluid or plasma. In an on-line process, blood is continuously taken from the patient, separated, the plasma is discarded, the blood cells are mixed with clean plasma and returned to the patient (the process is not unlike that used in kidney dialysis). At each session about two to three litres of plasma are exchanged. The procedure is usually repeated several times over about two weeks until sufficient plasma has been changed. The procedure is safe and the risks are small. It is not painful. However some patients find that it leaves them feeling tired for a day or two.
Clinical trials have demonstrated the benefit of plasma exchange for CIDP. For some patients it allows control of the disease to be maintained when immunosuppressive drugs are insufficiently effective. Some patients however do not appear to respond to plasma exchange.
Immunoglobulin
There is increasing evidence of the effectiveness against CIDP of intravenous infusions of immunoglobulin (also called gamma globulin or antibodies). Antibodies usually react with and neutralise germs which get into the body. These are `good' antibodies. Sometimes antibodies attack the body itself and these `bad' antibodies, or autoantibodies, may cause CIDP. However there are also anti-autoantibodies, which block these bad antibodies. It may be these anti-autoantibodies in immunoglobulin which help.
Whatever the explanation, some people with CIDP do seem to get better after having immunoglobulin. Research is going on to find out which patients.
It is given by infusion into a vein, usually every day for five days. Each infusion takes about five hours. The immunoglobulin used in the UK has an excellent safety record. Abroad there have been very rare cases of transmission of hepatitis but considerable care is now taken in the purification and removal of any viral particles which reduces this risk to the absolute minimum. With any blood product there is always a slight risk of transmission of a new infection such as Creutzfeld Jakob disease (CJD) which has received a great deal of recent publicity. For this reason immunoglobulin from British Donors is not currently being used as a source for the manufacture of immunoglobulin until there is confirmation that there is no risk associated with it. This extra safeguard should reduce the concerns of anyone receiving this very effective treatment. There is a rare (about 1 in 40,000) risk of serious allergic reaction at the start of each infusion, so careful monitoring is essential. Some patients only need one course. Others need repeated courses.
Physiotherapy
Physiotherapy has an important role to play in the assessment and management of CIDP. It helps to maximise a patient's physical potential, particularly where weakness is the predominant problem.
The aims of physiotherapy are to:
• maximise muscle strength and minimise muscle wastage by exercise using strengthening techniques;
• minimise the development of contractures (or stiffness) around joints; a physiotherapist can advise on passive stretching techniques to help maintain full range movement at joints;
• facilitate mobility and function; sometimes, if muscles are very weak, function can be improved by the use of splints and
• provide a physical assessment which may help in planning future management.
________________________________________
Living with CIDP
Coping with uncertainty
CIDP may follow a pattern of relapses and remissions or a more gradual increase in symptoms. During a relapse new symptoms occur or old symptoms which had previously subsided may recur. Relapses can last for several months and may be relatively slight or quite severe. A remission occurs when the symptoms experienced during the relapse disappear either partially or completely over a period of time which may last weeks, months or even years.
CIDP does not always have these patterns of being 'better' or 'worse'; sometimes symptoms can gradually increase over a period of many years and it may be difficult to identify `better' or `worse' times.
It is impossible to predict with certainty how CIDP is going to affect an individual in the future. The pattern of relapses and remissions varies greatly from person to person. A period of relapse can be very disturbing but many people make a good recovery. Coping with this uncertainty is one of the most difficult aspects of 'living with CIDP'. You should try and accept this variability without getting too worried about it.
You and your family and friends
A diagnosis such as CIDP of a chronic condition with an uncertain prognosis, may well throw a strain on family and other relationships. You may find it difficult to accept help when you need it, or your family and friends may feel that they cannot give help or become overprotective toward you. It is difficult to carry on family life as if nothing has happened. Everyone concerned may have to take on new roles. If you and your family and friends are able to speak openly and honestly with each other you will probably find that you are able to help each other through difficult times with the result that the bonds are strengthened.
Instinctively children are aware that something is wrong and that you are worried. It is important that their questions are answered as and when they occur. Older children can become surprisingly mature and a source of strength. Trying to keep your problems to yourself will not spare them any anxiety.
You and your doctor
It is important to build a good relationship with your doctors, both GP and specialist. Because of the rarity of the illness, many doctors will not have encountered it before. The symptoms are difficult to describe and may not be taken seriously at first. Each case of CIDP is different, and relapses, if they occur, may bring new symptoms and problems. Because of the variability in severity and progression of the disease, the doctor will not be able to give you a definite prognosis.
Although there is not one single overall treatment for CIDP, there is much that your doctor can do to help. Each person responds in different ways to different treatments. A period of experimentation with different treatment regimes is likely to be necessary in order to discover the regime which is most appropriate for you.
Attitude to life
It is important to be as positive as possible about everything. Our emotional state plays a large part in our health and although the norms of life may have to change for a while, the majority of patients with CIDP can expect a good quality of life.
Modification of ones lifestyle may be necessary but it is better to emphasise strengths, undertaking what can be achieved rather than failing to achieve the impossible. It is a natural reaction to become frustrated but the acceptance and understanding of the problem is more than half the battle. Addressing the problems of CIDP can be seen as bringing a new challenge.
Being positive can take a lot of effort, determination and even courage and can be helped by a similar attitude in those that support and help you.
What you can do to help yourself
You should follow as healthy a lifestyle as possible. This will help to prevent other illnesses and infections which have been shown to trigger relapses.
A nutritionally balanced diet will ensure you are getting all the vitamins and minerals you require. There is no evidence of any special dietary requirements for CIDP sufferers. It is sensible to keep your weight down, since more weight is more difficult for weak legs to carry.
Regular exercise is important for overall health and should be taken according to individual limits and capabilities. Over exertion causes fatigue. However a little regular exercise will help to minimise muscle wastage and give you a good feeling of wellbeing. Any form of exercise that you enjoy and can comfortably follow will prove beneficial. Ask your physiotherapist to show you.
Adequate rest periods are essential to avoid fatigue. Stress and tension may irritate the symptoms of CIDP and therefore relaxation will allow you to unwind and `recharge'.
Some patients find it useful to record their progress in a diary so that they can discuss changes of treatment in the light of their recent progress. Others find that this can increase their anxiety about the disease and is counter productive.
Original text by Eileen Evers and Professor Richard Hughes.
Second edition June 1998. Revised by Ronald Munro and Dr John Winer.
Page updated October 2003
________________________________________
© 1997-2004 GBS Support Group
Though much of our material has been written by neurologists and other health professionals, the Guillain-Barré Syndrome Support Group is a registered charity and not a medically qualified organisation. The information we supply is for general educational purposes only and should not be regarded as advice on the diagnosis or treatment of either the Guillain-Barré syndrome or any other medical condition. Whilst every effort has been made to ensure the accuracy of the information provided, the Guillain-Barré Syndrome Support Group can not be held responsible for such information. This information provided is designed to support, not replace, the relationship that exists between a patient and his/her existing doctor.
Introduction
This document has been written for patients who have been told that they may have CIDP (chronic inflammatory demyelinating poly[radiculo*]neuropathy), and for their relatives and friends. It aims to explain accurately and honestly what CIDP is, and hopefully will answer some of the questions you may have. If you do not understand or are worried by any of the information offered here, do ask your doctor to explain.
*'Radiculo' is sometimes omitted.
The degree of severity of CIDP and the way in which it affects people vary enormously from one sufferer to another. There is no typical CIDP. Therefore one general description and one certain prognosis are not possible. This booklet describes symptoms which are common among sufferers.
What is CIDP?
CIDP is defined thus:
• 'chronic' refers to the gradual course of the illness;
• 'inflammatory' means there is strong evidence that it is inflammation that causes the nerve damage;
• 'demyelinating' means that the damage is primarily to the insulating myelin sheaths around the nerve fibres; and
• 'poly[radiculo]neuropathy'; 'poly' means many, ['radiculo' means root,] 'neuro' means nerve and 'opathy' means disease; so poly[radiculo]neuro-pathy means a disease of many peripheral nerves [and their roots (which are the points of origin of the peripheral nerves from the spinal cord)].
CIDP is a very rare disease of the peripheral nervous system involving gradual development of weakness and loss of sensation predominantly in the arms and legs.
The incidence and prevalence of CIDP are very difficult to determine because of its rarity. Various estimates put the incidence at between 75 and 250 people per year in the UK.
The disease may start at any age, but is slightly more common in young adults. It is more common in men than women. For women, relapses are slightly more likely to occur during a pregnancy year. It is not hereditary; ie it is not passed on to children. It is not infectious; ie it is not caught from, or transmitted to, anybody else. It is not a psychiatric or `nervous' disorder.
No-one is sure what causes CIDP. Current research is investigating the role of preceding infections, immunisations and other events before the onset or relapses of CIDP. However, to date there is no general agreement on what causes the disease.
Symptoms
The severity of CIDP is extremely variable and the symptoms experienced vary considerably between patients. Initial symptoms may be vague and confusing to both the patient and the doctor. Subjective symptoms such as fatigue and sensory disturbance are difficult to communicate. In the early stages it may be difficult for the patient to persuade the doctor that there is anything physically wrong.
Early symptoms usually include either tingling (pins and needles) or loss of feeling (numbness) beginning in the toes and fingers, or weakness, so that legs feel heavy and wooden, arms feel limp and hands cannot grip or turn things properly. These symptoms may remain mild and result in only minor disruption the patient's normal life. Alternatively they may become progressively and gradually worse over a period of several weeks, months or even years sometimes, but very rarely, to the extent that the patient is bed bound with profound weakness of the arms.
CIDP usually presents with both weakness and sensory symptoms, sometimes with weakness alone, and rarely with sensory symptoms alone. The arms and legs are usually affected together, the legs more than the arms. Prickling and tingling sensations in the extremities are common and may be painful. Aching pain in the muscles also occurs. Tendon reflexes are usually lost. As the disease becomes more severe, a tremor may develop, usually in the upper limbs. Very rarely patients may develop facial weakness.
Diagnosis
CIDP can be difficult to diagnose as there is no conclusive diagnostic test for it. The history of symptoms is often vague with varying signs which could be symptoms of a number of conditions. Therefore a long period of time may elapse before a suggestion of CIDP is made.
CIDP is closely related to Guillain-Barré syndrome (GBS), which is also due to inflammation of the peripheral nerves. Symptoms experienced by patients are similar, but GBS is a more acute condition in which symptoms appear rapidly over a period of days or a few weeks. GBS patients usually make a spontaneous recovery over a period of weeks or months.
CIDP is a chronic condition and is only distinguished from GBS by virtue of its pattern of progression. In GBS the low point is reached within four weeks whereas in CIDP the initial progressive phase lasts longer, usually much longer. Some CIDP patients are initially diagnosed as having GBS. Only when the deterioration continues over an extended period, or when one or more relapse(s) occur after a period of improvement, is the illness reclassified as CIDP.
The diagnosis is made primarily on clinical grounds, not laboratory tests. This means that the doctor has to rely on the history and clinical examination fitting into the pattern of CIDP. The doctor will particularly want to know of any recent possible toxin exposure (insecticides, solvents), medication, alcohol intake, tick bites, family history of nerve disease, or symptoms of any coincidental illnesses, such as diabetes (thirst, frequent urination, weight loss) or arthritis (painful joints). Any of these might lead to a different diagnosis.
Essential criteria for a positive diagnosis of CIDP are:
• progressive weakness in two or more limbs due to a poly[radiculo]neuropathy;
• loss or diminution of tendon reflexes;
• progression for more than eight weeks or recurrence or relapse; and
• evidence of damage to peripheral nerve myelin from nerve conduction tests.
Investigations will include blood tests, usually a lumbar puncture and nerve conduction tests with an electromyogram (EMG) machine, and possibly a Magnetic Resonance Image (MRI) scan. A nerve biopsy may also be performed. In cases where CIDP is associated with an abnormal protein in the blood (Paraproteinaemia) a bone marrow examination and X-rays of the bones may be required.
The lumbar puncture involves lying on one side and having a needle inserted under local anaesthesia between the vertebrae into the sac of cerebrospinal fluid which surrounds the nerve roots. The idea is worse than the procedure really is and it does not usually hurt. The cerebrospinal fluid often contains much more protein than usual while the cell content remains normal. If different changes are found the doctor has to review the diagnosis with even more care.
The EMG is an electrical recording of the muscle activity. If a nerve is stimulated with a brief electrical pulse (felt like a sharp tap or jolt) muscle activity can be recorded and the speed of nerve conduction worked out. Usually in CIDP nerve conduction is markedly slowed or even blocked. The test lasts about half an hour. It is only slightly uncomfortable and quite harmless.
The Magnetic Resonance Image (MRI) Scanner is a more recent diagnostic tool and takes X-ray type pictures of the brain and spinal cord (ie of the central nervous system). The procedure involves the patient's upper body being slid into the tunnel-like scanner and remaining absolutely still during the scanning process which lasts about half an hour. It is entirely painless. MRI scans are used to eliminate the possibility of damage to the central nervous system.
Sometimes a nerve biopsy may also be performed. This involves a small piece of nerve being removed, usually from the side of the heel of the foot, to be examined in the laboratory. This allows the doctor to see any inflammation and the type of nerve damage. Having the biopsy is not painful because local anaesthetic is used, but the skin below may become sore for a week or two afterwards. The patient may be left with some loss of sensation in a very small area on the side of the foot.
Progression
It is helpful to subdivide CIDP into four sub-categories which are characterised by the pattern of progression of the disease. These are:
• 'subacute' where symptoms continue to progress and worsen for at least four weeks, but not more than eight weeks before levelling off or improving;
• 'chronic progressive' where symptoms continue to progress and worsen for a period exceeding eight weeks;
• 'chronic relapsing' where there is more than one episode in which symptoms progress and worsen for a period greater than four weeks; and
• 'recurrent GBS' where each bout has a progressive phase of less than four weeks.
Clearly the cutoff points used are somewhat arbitrary.
The most common form of the disease is the chronic relapsing form largely due to the beneficial effects of treatment but sometimes due to spontaneous remissions. About 80% of patients have this form of the disease. About 10% of patients have the subacute disease which plateaus and then disappears spontaneously. Patients with recurrent GBS form only a small percentage of CIDP patients.
Thus some patients only have a single 'bout' of CIDP lasting for several months or years, after which a spontaneous recovery may be made. Others have many bouts in between which spontaneous remission and recovery occurs. After each bout patients may be left with some residual numbness and weakness and sometimes discomfort. For many this will not seriously interfere with their lives, and they are able to continue with or resume their normal occupation. However a very small number are left severely disabled and may be dependent on a wheelchair or even bed bound. There are only a very unfortunate few for whom the disease continues to progress without remission.
What is going on?
The function of the brain is to interpret sensations and initiate movements and other responses. This activity depends on a complex communication system of nerves running to every part of the body via the spinal cord. Each nerve in this communication system can be compared to an electric cable. The inner part of the nerve, the axon, is made of conductive tissue and carries messages or impulses throughout the body like the wires in an electric cable. The axon is surrounded by a layer of fatty substance, the myelin sheath, like the insulating cover on a cable. The myelin helps the conduction of messages along the nerves as well as insulating and protecting the nerve.
The symptoms of CIDP are due to inflammation and damage to the peripheral nerves and their roots. The peripheral nerves connect the central nervous system to the skin and muscle. CIDP is probably an autoimmune disease, ie one in which the immune system attacks its own body. The most likely mechanism is that the immune cells, called lymphocytes, somehow or other make a mistake and attack the nerves. The main part of the nerve which is attacked is the insulating sheath, or myelin.
The way in which the lymphocytes are tricked into attacking the body is still the subject of research. The lymphocytes may cause the formation of chemicals called antibodies which circulate in the blood and damage the myelin. Attempts to identify these antibodies have so far been only partially successful.
Fortunately the myelin sheath can be replaced within a few weeks or months by the myelin-forming cells, named Schwann cells. If the nerve axons are damaged these can also regrow, but this is much slower. Research is continuing into the underlying causes and mechanisms of the disease.
Treatment
Treatment of CIDP is usually very effective with about 80% of new cases making a dramatic response to therapy, although there is no one shot curative treatment in the way that antibiotics might cure an infection. Drug treatments are generally thought to work by suppressing the autoimmune response. This in turn reduces the disabling symptoms of the disease. Examples are steroids, immunosuppressive drugs, plasma exchange and intravenous immunoglobulin.
Obviously suppressing the immune response cannot be undertaken lightly because it runs the risk of suppressing normal immune responses to infections. The decision whether to try these treatments has to be tailored by the doctor to the individual needs of each patient. However it is reassuring to know that treatments are available, that demyelinated nerves can repair themselves, and that some patients get better without treatment.
Because of the small number of patients and because most of the treatment methods are quite new, there is limited evidence available of the relative effectiveness of different treatments. Some patients respond to one method of treatment and not to others. There are only a very unfortunate few who cannot be helped by any of these treatments.
Steroids
Controlled trials have demonstrated that steroids are beneficial in CIDP. A wide range of dosage schedules has been used and no work has been addressed to the question of which is best.
The high risks of serious side effects resulting from the prolonged use of high dose steroids are well known. These include osteoporosis (thinning of bones), cataracts, diabetes, hypertension (raised blood pressure), obesity and myopathy (muscle weakness).
If the dosage levels required to control the CIDP appear unacceptably high or unacceptably prolonged, it may be suggested that other immunosuppressive drugs are used.
Immunosuppressive drugs
Clinical experience suggests that immunosuppressive drugs help. These include azathioprine, cyclophosphamide and cyclosporin. Azathioprine is the most widely used in the treatment of CIDP.
The use of these drugs carries the theoretical side effect of increased risk of developing cancer, but in practice this increased risk is very small.
Plasma exchange
Plasma exchange involves the patient being connected to a machine which can separate the blood cells from the fluid or plasma. In an on-line process, blood is continuously taken from the patient, separated, the plasma is discarded, the blood cells are mixed with clean plasma and returned to the patient (the process is not unlike that used in kidney dialysis). At each session about two to three litres of plasma are exchanged. The procedure is usually repeated several times over about two weeks until sufficient plasma has been changed. The procedure is safe and the risks are small. It is not painful. However some patients find that it leaves them feeling tired for a day or two.
Clinical trials have demonstrated the benefit of plasma exchange for CIDP. For some patients it allows control of the disease to be maintained when immunosuppressive drugs are insufficiently effective. Some patients however do not appear to respond to plasma exchange.
Immunoglobulin
There is increasing evidence of the effectiveness against CIDP of intravenous infusions of immunoglobulin (also called gamma globulin or antibodies). Antibodies usually react with and neutralise germs which get into the body. These are `good' antibodies. Sometimes antibodies attack the body itself and these `bad' antibodies, or autoantibodies, may cause CIDP. However there are also anti-autoantibodies, which block these bad antibodies. It may be these anti-autoantibodies in immunoglobulin which help.
Whatever the explanation, some people with CIDP do seem to get better after having immunoglobulin. Research is going on to find out which patients.
It is given by infusion into a vein, usually every day for five days. Each infusion takes about five hours. The immunoglobulin used in the UK has an excellent safety record. Abroad there have been very rare cases of transmission of hepatitis but considerable care is now taken in the purification and removal of any viral particles which reduces this risk to the absolute minimum. With any blood product there is always a slight risk of transmission of a new infection such as Creutzfeld Jakob disease (CJD) which has received a great deal of recent publicity. For this reason immunoglobulin from British Donors is not currently being used as a source for the manufacture of immunoglobulin until there is confirmation that there is no risk associated with it. This extra safeguard should reduce the concerns of anyone receiving this very effective treatment. There is a rare (about 1 in 40,000) risk of serious allergic reaction at the start of each infusion, so careful monitoring is essential. Some patients only need one course. Others need repeated courses.
Physiotherapy
Physiotherapy has an important role to play in the assessment and management of CIDP. It helps to maximise a patient's physical potential, particularly where weakness is the predominant problem.
The aims of physiotherapy are to:
• maximise muscle strength and minimise muscle wastage by exercise using strengthening techniques;
• minimise the development of contractures (or stiffness) around joints; a physiotherapist can advise on passive stretching techniques to help maintain full range movement at joints;
• facilitate mobility and function; sometimes, if muscles are very weak, function can be improved by the use of splints and
• provide a physical assessment which may help in planning future management.
________________________________________
Living with CIDP
Coping with uncertainty
CIDP may follow a pattern of relapses and remissions or a more gradual increase in symptoms. During a relapse new symptoms occur or old symptoms which had previously subsided may recur. Relapses can last for several months and may be relatively slight or quite severe. A remission occurs when the symptoms experienced during the relapse disappear either partially or completely over a period of time which may last weeks, months or even years.
CIDP does not always have these patterns of being 'better' or 'worse'; sometimes symptoms can gradually increase over a period of many years and it may be difficult to identify `better' or `worse' times.
It is impossible to predict with certainty how CIDP is going to affect an individual in the future. The pattern of relapses and remissions varies greatly from person to person. A period of relapse can be very disturbing but many people make a good recovery. Coping with this uncertainty is one of the most difficult aspects of 'living with CIDP'. You should try and accept this variability without getting too worried about it.
You and your family and friends
A diagnosis such as CIDP of a chronic condition with an uncertain prognosis, may well throw a strain on family and other relationships. You may find it difficult to accept help when you need it, or your family and friends may feel that they cannot give help or become overprotective toward you. It is difficult to carry on family life as if nothing has happened. Everyone concerned may have to take on new roles. If you and your family and friends are able to speak openly and honestly with each other you will probably find that you are able to help each other through difficult times with the result that the bonds are strengthened.
Instinctively children are aware that something is wrong and that you are worried. It is important that their questions are answered as and when they occur. Older children can become surprisingly mature and a source of strength. Trying to keep your problems to yourself will not spare them any anxiety.
You and your doctor
It is important to build a good relationship with your doctors, both GP and specialist. Because of the rarity of the illness, many doctors will not have encountered it before. The symptoms are difficult to describe and may not be taken seriously at first. Each case of CIDP is different, and relapses, if they occur, may bring new symptoms and problems. Because of the variability in severity and progression of the disease, the doctor will not be able to give you a definite prognosis.
Although there is not one single overall treatment for CIDP, there is much that your doctor can do to help. Each person responds in different ways to different treatments. A period of experimentation with different treatment regimes is likely to be necessary in order to discover the regime which is most appropriate for you.
Attitude to life
It is important to be as positive as possible about everything. Our emotional state plays a large part in our health and although the norms of life may have to change for a while, the majority of patients with CIDP can expect a good quality of life.
Modification of ones lifestyle may be necessary but it is better to emphasise strengths, undertaking what can be achieved rather than failing to achieve the impossible. It is a natural reaction to become frustrated but the acceptance and understanding of the problem is more than half the battle. Addressing the problems of CIDP can be seen as bringing a new challenge.
Being positive can take a lot of effort, determination and even courage and can be helped by a similar attitude in those that support and help you.
What you can do to help yourself
You should follow as healthy a lifestyle as possible. This will help to prevent other illnesses and infections which have been shown to trigger relapses.
A nutritionally balanced diet will ensure you are getting all the vitamins and minerals you require. There is no evidence of any special dietary requirements for CIDP sufferers. It is sensible to keep your weight down, since more weight is more difficult for weak legs to carry.
Regular exercise is important for overall health and should be taken according to individual limits and capabilities. Over exertion causes fatigue. However a little regular exercise will help to minimise muscle wastage and give you a good feeling of wellbeing. Any form of exercise that you enjoy and can comfortably follow will prove beneficial. Ask your physiotherapist to show you.
Adequate rest periods are essential to avoid fatigue. Stress and tension may irritate the symptoms of CIDP and therefore relaxation will allow you to unwind and `recharge'.
Some patients find it useful to record their progress in a diary so that they can discuss changes of treatment in the light of their recent progress. Others find that this can increase their anxiety about the disease and is counter productive.
Original text by Eileen Evers and Professor Richard Hughes.
Second edition June 1998. Revised by Ronald Munro and Dr John Winer.
Page updated October 2003
________________________________________
© 1997-2004 GBS Support Group
Though much of our material has been written by neurologists and other health professionals, the Guillain-Barré Syndrome Support Group is a registered charity and not a medically qualified organisation. The information we supply is for general educational purposes only and should not be regarded as advice on the diagnosis or treatment of either the Guillain-Barré syndrome or any other medical condition. Whilst every effort has been made to ensure the accuracy of the information provided, the Guillain-Barré Syndrome Support Group can not be held responsible for such information. This information provided is designed to support, not replace, the relationship that exists between a patient and his/her existing doctor.
Saturday, January 10, 2009
Coping with Peripheral Neuropathy
Peripheral neuropathies are a large group of chronic illnesses that cause changes in your life far beyond simply damaging nerves. Sufferers often confront pain, weakness, depression, anxiety, fatigue and insomnia. In addition there are long term changes in roles and relationships.
Dr. Berman tackles these psychological and social issues in Coping with Peripheral Neuropathy from the viewpoint both of an experienced psychiatrist and of a fellow-sufferer with neuropathy. He details strategies to deal with changing roles at work and at home. He explores relationships and sexuality.
Dr. Berman lays the groundwork for learning to cope and improve your quality of life in the face of these chronic diseases. He draws on experience treating chronically physically ill patients including neuropathy patients, as well as his own experience of having a neuropathy for ten years. Many good references are included to expand your knowledge and provide additional help.
About the AuthorScott I. Berman MD is a psychiatrist with extensive experience working with chronically physically ill patients. In addition, he personally suffers from a neuropathy (CIDP). He lives in Bethlehem PA with his wife and three children.
Dr. Berman tackles these psychological and social issues in Coping with Peripheral Neuropathy from the viewpoint both of an experienced psychiatrist and of a fellow-sufferer with neuropathy. He details strategies to deal with changing roles at work and at home. He explores relationships and sexuality.
Dr. Berman lays the groundwork for learning to cope and improve your quality of life in the face of these chronic diseases. He draws on experience treating chronically physically ill patients including neuropathy patients, as well as his own experience of having a neuropathy for ten years. Many good references are included to expand your knowledge and provide additional help.
About the AuthorScott I. Berman MD is a psychiatrist with extensive experience working with chronically physically ill patients. In addition, he personally suffers from a neuropathy (CIDP). He lives in Bethlehem PA with his wife and three children.
Monday, January 5, 2009
My promise to you in our search for a cure of Neuropathy
Happy New Year....It is 2009 and this is my promise to you to do my utmost in our
search for a cure for Neuropathy and it's variance's. As an advocate and support group leader I will do all that is in my power to assist and help anyone that needs support of any kind in there quest to survive as a patient, caregiver, friend or family member. Join me on this journey in seeking a cure and a better quality of life to all who suffer from Neuropathy.
Contact me: david-hines@hotmail.com
Warmest Regards,
David Hines
Patient advocate
Peripheral Neuropathy, Idiopathic Progressive Polyneuropathy, CIDP, Disturbance of the skin sensation, Diabetic Painful Neuropathy (DPN)
search for a cure for Neuropathy and it's variance's. As an advocate and support group leader I will do all that is in my power to assist and help anyone that needs support of any kind in there quest to survive as a patient, caregiver, friend or family member. Join me on this journey in seeking a cure and a better quality of life to all who suffer from Neuropathy.
Contact me: david-hines@hotmail.com
Warmest Regards,
David Hines
Patient advocate
Peripheral Neuropathy, Idiopathic Progressive Polyneuropathy, CIDP, Disturbance of the skin sensation, Diabetic Painful Neuropathy (DPN)
Wednesday, December 31, 2008
Happy New Year ! Hope-in-motion !
Happy New Year to all ! Lord grant us strengh to continue to keep Hope-in-motion as we continue to strive to live with our illnesses and pain. May there be a cure soon for all neurological disorders/diseases.
Your friend, advocate and fellow patient/sufferer,
with Hope,
David Hines
Your friend, advocate and fellow patient/sufferer,
with Hope,
David Hines
Friday, November 28, 2008
IVIg infusion update for CIDP
I had my IVIg infusion this morning. I had gone into a semi-remittance state for about 10-12 days but today is came roaring back with a vengance. I was also due for a new fentanyl patch so I threw it on real quick but Nothing! No relief! I cannot believe how this disease progresses inspite of all the medications I take.
I get so frustrated I can hardly hold back my tongue.
What really upset me is I finally was able to get my dental insurance to get all the dental work I will need to fix what the fentanyl patch has done to my teeth and gums. I was in so much pain and was so weak I couldn't make it to my appointment and stayed in bed for much of the day. I now will have to wait until December 19th to see the dentist. The dentist told me last week after my x-rays and examination that is will cost $17,000 dollars and my co-pay will be over $6,000 dollars. They are giving me a $2,300 dollar line of credit so I'm so blessed even though sometimes it is hard to see. I do thank God for what He has done for me and what He is teaching me everyday. Patience is one and trust is another.
I'm pooped, so I'm finishing up and going to bed for the night.
God Bless and always know there is Hope and we need to keep it in motion.
David
I get so frustrated I can hardly hold back my tongue.
What really upset me is I finally was able to get my dental insurance to get all the dental work I will need to fix what the fentanyl patch has done to my teeth and gums. I was in so much pain and was so weak I couldn't make it to my appointment and stayed in bed for much of the day. I now will have to wait until December 19th to see the dentist. The dentist told me last week after my x-rays and examination that is will cost $17,000 dollars and my co-pay will be over $6,000 dollars. They are giving me a $2,300 dollar line of credit so I'm so blessed even though sometimes it is hard to see. I do thank God for what He has done for me and what He is teaching me everyday. Patience is one and trust is another.
I'm pooped, so I'm finishing up and going to bed for the night.
God Bless and always know there is Hope and we need to keep it in motion.
David
Wednesday, November 5, 2008
Tuesday, November 4, 2008
Monday, October 27, 2008
Invisible Disabilities !
I would like to share one of my favorite web sites. One of the most common statements I hear are "But you look so good!" Well, if they only could see what I see and feel like I feel! Thus, the web site of the invisible disability advocate. Please take a few moments and click here: www.invisibledisabilities.ning.com/profile/David
Thank you and may God bless you,
David Hines
Thank you and may God bless you,
David Hines
Friday, October 17, 2008
Palm Springs Neuropathy Support Group
I wanted to let those that are interested we will be having our 2nd support group
meeting on the 24th of October a Friday at 10 am. If you are interested please respond to : SCCNA08@hotmail.com (Southern California Chapter of the Neuropathy Association08)
You can also comment on this blog entry and I will be in touch with you with the
information on our meeting site. I have been in touch with the Mizell Senior Center regarding a room to use for future meetings. They will be getting back to me soon I hope.
If you know anyone who might be interested please pass on the contact information for us to share with members of our group. We hope to grow in size over the up coming months and years. We also have a group in the Temecula, Lake Elsinore, Wildomar area's. If you live in that area get in touch with me and I can pass on information for that area's group. Thanks to all who have helped us in getting the word out about our group meetings in the Southern California area's. We hope and pray to start other meeting's in other area's of our state. If you have an area in which you would like to see groups started let me know and we can get the ball rolling for you.
God bless everyone,
David Hines
Advocate/Patient of CIDP
meeting on the 24th of October a Friday at 10 am. If you are interested please respond to : SCCNA08@hotmail.com (Southern California Chapter of the Neuropathy Association08)
You can also comment on this blog entry and I will be in touch with you with the
information on our meeting site. I have been in touch with the Mizell Senior Center regarding a room to use for future meetings. They will be getting back to me soon I hope.
If you know anyone who might be interested please pass on the contact information for us to share with members of our group. We hope to grow in size over the up coming months and years. We also have a group in the Temecula, Lake Elsinore, Wildomar area's. If you live in that area get in touch with me and I can pass on information for that area's group. Thanks to all who have helped us in getting the word out about our group meetings in the Southern California area's. We hope and pray to start other meeting's in other area's of our state. If you have an area in which you would like to see groups started let me know and we can get the ball rolling for you.
God bless everyone,
David Hines
Advocate/Patient of CIDP
Wednesday, August 20, 2008
Dr. Nitin Sethi, MD a friend of our community of PN'ers
Dr. Nitin Sethi, MD is currently an assistant professor of neurology for Cornell University. His patient-friendly weblog can be found at http://www.braindiseases.info/
Dr. Sethi is a friend of the Northern Calif Chapter of the Neuropathy Assoc. and the Southern Calif Chapter of the Neuropathy Assoc. If you have any questions regarding any neurological disorders, diseases etc. send me an email and I will do my utmost in getting an answer for you. Just please remember do so judiciously as His time is stretched in His everyday duties at Cornell University. You can also do your own research and share what you find with us and we could add it to our own blogs and websites. As information comes in I will share it with you as soon as I can get it posted.
Enjoy, oh happy day!
Chief Editor,
David Hines
NCCNA08@hotmail.com
Dr. Sethi is a friend of the Northern Calif Chapter of the Neuropathy Assoc. and the Southern Calif Chapter of the Neuropathy Assoc. If you have any questions regarding any neurological disorders, diseases etc. send me an email and I will do my utmost in getting an answer for you. Just please remember do so judiciously as His time is stretched in His everyday duties at Cornell University. You can also do your own research and share what you find with us and we could add it to our own blogs and websites. As information comes in I will share it with you as soon as I can get it posted.
Enjoy, oh happy day!
Chief Editor,
David Hines
NCCNA08@hotmail.com
Tuesday, August 19, 2008
New nurse for my IVIg infusions this week
I will meet my new nurse this friday the 22th. The person in charge of nursing schedules at Crescent Health Care in southern Cal called me and told me her name is Kathy. I had the same nurse for over 6 months until I moved so now I get to meet the new one. I will update you on how it all turns out. I continue to strive to keep "Hope in Motion". God bless, David
Tuesday, August 12, 2008
New nurse for my IVIg infusions
I received a message today from Crescent Health Care the company who handles my IVIg infusions. They handle everything from getting the "Gammaguard Liquid" to sending the product to me at home and sending the nurse to give me the infusion treatment. I get the infusions every 14 days. Well, I moved and I requested my regular nurse. She has been my nurse since January and I like her alot. And she is a christian which is the best part because she and I can talk openly about our faith and neither one of us get in trouble for sharing our faith with each other in this "politically correct" society we live in. Well, they said I cannot keep my good friend nurse Barbara. They said my new address is just to far for her to be allowed to travel. It would had been a 70 mile ride one way (but she told me if I were to request that I keep my same nurse they would let it happen but sadly she was wrong). I will have to get to know a new nurse. :(
Well, there is a "reason for everything" I trust God has a good one, He always does!
Well, there is a "reason for everything" I trust God has a good one, He always does!
New Support Groups in Southern California !
BREAKING NEWS ! Just coming into the news room. "Southern California Chapter of the Neuropathy Association" announces two new support groups. The Temucula valley and the Desert communities will launch there support groups in two weeks!
On August 27th, 2008 at 10:00am the Palm Springs area group will meet at Rick's restaraunt and Bakery on Palm Canyon Drive. For more information call: David Hines at (951) 671-5980 or (951) 852-7843.
The Temecula valley group will meet that same week (Exact date TBA).
Our goal is to have support groups throughout Southern California just as our good friends in Northern Calif has done. (see http://www.pnhelp.org/) This is very exciting news for the many people who suffer alone without anyone to talk to or to get information from. Please check back often for continuing updates regarding news from "SCCNA" and it's founding members. Let us all Choose Hope by putting Hope in Motion!
God bless,
David Hines,
Chief Editor and PN'er
"Together we can and will beat Neuropathy"
http://www.neuropathy.org/
On August 27th, 2008 at 10:00am the Palm Springs area group will meet at Rick's restaraunt and Bakery on Palm Canyon Drive. For more information call: David Hines at (951) 671-5980 or (951) 852-7843.
The Temecula valley group will meet that same week (Exact date TBA).
Our goal is to have support groups throughout Southern California just as our good friends in Northern Calif has done. (see http://www.pnhelp.org/) This is very exciting news for the many people who suffer alone without anyone to talk to or to get information from. Please check back often for continuing updates regarding news from "SCCNA" and it's founding members. Let us all Choose Hope by putting Hope in Motion!
God bless,
David Hines,
Chief Editor and PN'er
"Together we can and will beat Neuropathy"
http://www.neuropathy.org/
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