Interesting to note here that my new neurologist says my peripheral neuropathy is GONE!!!! WTH? Gone? Gone? Gone where, lol?
Gone to nerve compression syndromes systemwide! He dx'd me with carpal tunnel in my right hand, tarpal tunnel in my left foot and ulnar neuropathy in both arms. Oh yeah....good one! LOL I'm being sent to physical therapy in a couple days to teach me how to squeeze a ball the right way I guess. Did I mention that in my sacroilitis xrays there was an incidental finding of a 5mm vertebrae slip? Oh boy, with the TN out believe you me, I'm not feeling the pain from anywhere else but my FACE and JAW and the constant ice pick in my ear right now. Being sent for PT for THAT too eventually..this doc takes a little longer to get going, lol. Neuro wants to dump me as fast as possible...haha
On the bright side, at least I hope its bright...my neuro is sending me to a new orthopedic / neuro surgeon for my cervical spine impingement and neural problems. Interesting and hopeful. This time I'm bringing hubbie for support..I'm so sick and tired of incompetence...just blown away with it that I need help.
It's been guessed at that the nerve compressions are coming from inflammation in the blood vessels, which would account I suppose for the high platelets and wbc's, the low rbc's and the immune complex interference in my blood labs for ANA's. Wish I knew folks, wish I knew. I'm on 60mg of prednisone now for this flare and doubled my cellcept to 2000mg a day and up to 1000 mg a day of tegretol (an anti seizure med) for the Trigeminal and geniculate and occipital neuralgia plaguing me. My pain is about a constant 4 or 5 with bouts of extremeness at about an 8 that last anywhere from a few minutes to an hour of HORROR-IFIC pain.
Feel like some brain fog is back, but then its the holidays and lots to do and lots of loss of sleep could be part of it..btw, if your reading this: Happy Holidays! Much love and luck and health...Gentle HUGS... Julie
ps: here's some info on vasculitis and arteritis and nerve compressions:
From www.healthblurbs.com:
Vasculitis Blood Vessels Inflammation Causes Systemic, Organ Symptoms for Medication Treatment
Undoubtedly, this type of attack can lead to some very serious health complications.
There are two classifications of symptoms you may experience with vasculitis, those affecting you generally (systemic) and those affecting a specific organ or body system. Common systemic signs indicative of body wide blood vessel inflammation include:
- fever
- weight loss
- appetite loss
- generalized aches, pains
- fatigue, weakness, paralysis
- painful chewing, swallowing
- confusion, forgetfulness ~ dementia
- sinus infections
- nose, mouth ulcers
- muscle ~ aches, pains
- joints aches ~ arthritis
- eyes ~ blurring, double vision, lost vision
- ears ~ chronic middle ear infections, hearing loss
- gastrointestinal tract ~ abdominal pain, bloody diarrhea
- brain ~ headaches, confusion, changes in behavior, strokes
- lungs ~ shortness of breath, chest x ray similar to pneumonia
- skin ~ spots, petechiae, splotches, bruises, hives, can be itchy or painless
- nerves ~ numbness, tingling, weakness, loss of feeling, strength, shooting pains in hands, arms, legs, feet
- side effect of infections
- allergic response to a medication
- higher incidence for those with hepatitis B & C viruses
- associated with blood cancers ~ leukemia, lymphoma,myeloma
- linked to autoimmune system diseases ~ lupus, rheumatoid arthritis, scleroderma
- cytotoxic medication
- corticosteroid medication
- Rheumatoid Vasculitis ~ occurs with rheumatoid arthritis
- Microscopic Polyangiitis ~ often affects the kidneys, skin, nerves
- Churg-Strauss Syndrome ~ lungs, skin, kidneys, heart; asthma history
- Central Nervous System Vasculitis ~ affects brain, sometimes spinal cord
- Buerger’s Disease ~ affects blood flow to hands and feet; more likely in smokers
- Behcet’s Disease ~ often younger of Mediterranean, Middle Eastern, Far Eastern descent
- Cryoglobulinemia ~ lower limb rash, arthritis, nerve damage; those with lymphoma, hepatitis C
- Polyarteritis Nodosa ~ commonly affects the kidneys, skin, nerves; 30-50 age group, men more likely; associated with chronic hepatitis B, hairy cell leukemia
- Polymyalgia Rheumatica ~ large joints (shoulders and hips); along with giant cell arteritis
- Takayasu’s Arteritis ~ affects the aorta & its branches; Asian women under 40
- Wegener’s Granulomatosis ~ upper respiratory tract (nose, sinuses, and throat), lungs, kidneys; middle aged plus
- Giant Cell Arteritis ~ headache, fever, blurred vision, pain in the jaw, shoulders, hips; affecting adults over 50; Scandinavian higher risk
- Henoch-Schonlein Purpura ~ commonly affects the skin, kidneys, joints, stomach; often found in children following upper respiratory infection
Vasculitis may disappear, go into periods of remission or be chronic. In some severe cases, it can lead to disability or death.
As for now, there is no evidence supporting a specific diet to combat an immune system gone wild. However, as with most health issues, following a healthy diet plan and regular exercise is encouraged.
AND on nerve compressions and arteritis or vasculitis:
Medicine.net link to nerve compression info: http://www.medicinenet.com/pinched_nerve/article.htm
and on vasculitis causing nerve compressions from the National Institute of Neurological Disorders and Strokes:
Vasculitis Syndromes of the Central and Peripheral Nervous Systems Fact Sheet
What is vasculitis?
How does vasculitis affect the nervous system?
What are the symptoms?
How are these syndromes diagnosed?
What are some of these syndromes called and how are they treated?
Are there additional vasculitis disorders that can cause neurological symptoms?
What research is being done to better understand these syndromes?
Where can I get more information?
How does vasculitis affect the nervous system?
What are the symptoms?
How are these syndromes diagnosed?
What are some of these syndromes called and how are they treated?
Are there additional vasculitis disorders that can cause neurological symptoms?
What research is being done to better understand these syndromes?
Where can I get more information?
What is vasculitis?
Vasculitis is an inflammation of
blood vessels, which includes the veins, arteries, and capillaries.
Depending on the type,
vasculitis can affect blood vessels
of any type, size, or location. Inflammation occurs with infection or is
thought to be
due to a faulty immune system
response. Dysfunction may occur due to the inflammation itself or over
time as the blood vessel
walls swell, harden, thicken, and
develop scar tissue. This narrows the passage through which blood can
flow. As the condition
progresses, it can slow or
completely stop the normal flow of blood.
How does vasculitis affect the nervous system?
Vasculitis can cause problems in any
organ system, including the central (CNS) and peripheral (PNS) nervous
systems. Vasculitic
disorders, or syndromes, of the CNS
and PNS are characterized by the presence of inflammatory cells in and
around blood vessels,
and secondary narrowing or blockage
of the blood vessels that nourish the brain, spinal cord, or peripheral
nerves. Any type
or size of blood vessel may be
involved—arteries, arterioles, veins, venules, or capillaries.
What are the symptoms?
Avasculitis syndrome may begin suddenlyor develop over time. Symptoms include:
- headaches, especially a headache that doesn’t go away
- fever
- malaise (feeling out-of-sorts)
- rapid weight loss
- confusion or forgetfulness leading to dementia
- aches and pains in the joints and muscles
- pain while chewing or swallowing
- paralysis or numbness, usually in the arms or legs
- visual disturbances, such as double vision, blurred vision, or blindness
- seizures, convulsions
- stroke or transient ischemic attack (TIA, sometimes also called a “mini-stroke”)
- unusual rashes or skin discoloration
- problems with the kidneys or other organs
How are these syndromes diagnosed?
A doctor who suspects CNS or PNS
vasculitis will gather a comprehensive medical history of the
individual, perform a physical
examination, order laboratory tests
(primarily blood tests), and recommend any other tests that seem
appropriate. Electromyography
and nerve conduction studies
identify blocks and loss of nerve supply to muscle due to vasculitic
nerve damage.
Diagnostic imaging of the brain blood vessels such as magnetic resonance or computed tomography angiograms can sometimes identify narrowing in the larger blood vessels. Direct injection of a contrast dye into brain blood vessels may be needed to look for narrowings consistent with vasculitis in medium-sized brain arteries.
However, the diagnosis of vasculitis often requires evidence that there is ongoing inflammation. Inflammatory cells may be found in the spinal fluid. Often there is a need to conduct a tissue biopsy to examine blood vessels under a microscope. In some cases a brain biopsy may be necessary to evaluate the compromised tissue. A definitive diagnosis is important because the treatment usually requires powerful immune-suppressive drugs. In addition, it is important to make sure that an infection is not causing the inflammation.
Diagnostic imaging of the brain blood vessels such as magnetic resonance or computed tomography angiograms can sometimes identify narrowing in the larger blood vessels. Direct injection of a contrast dye into brain blood vessels may be needed to look for narrowings consistent with vasculitis in medium-sized brain arteries.
However, the diagnosis of vasculitis often requires evidence that there is ongoing inflammation. Inflammatory cells may be found in the spinal fluid. Often there is a need to conduct a tissue biopsy to examine blood vessels under a microscope. In some cases a brain biopsy may be necessary to evaluate the compromised tissue. A definitive diagnosis is important because the treatment usually requires powerful immune-suppressive drugs. In addition, it is important to make sure that an infection is not causing the inflammation.
What are some of these syndromes called and how are they treated?
The diagnosis of a CNS or PNS
vasculitis disorder will depend upon the number of blood vessels
involved, their size, and their
location in the CNS or PNS as well
as the types of organs involved. Although these disorders are rare,
there are many of them.
Some of the better understood
syndromes are:
Temporal arteritis (also called giant cell arteritis or cranial arteritis)Temporal arteritis is a common chronic inflammatory disease of large blood vessels occurring primarily in people 50 and older. It most often involves narrowing and sometimes blockage of the arteries that bring blood to the brain. Doctors will diagnose temporal arteritis if at least three of the following symptoms are present:
Abrupt but reversible blindness is the most dramatic complication of temporal arteritis. About one in ten individuals with temporal arteritis will develop blindness in one eye, preceded by visual disturbances.Once one eye is affected, three out of four individuals will go on to lose vision in the other eye, most in two weeks or less.
The main goal of treatment for temporal arteritis is to prevent blindness. Most individuals respond well to steroid drugs, such as prednisone and methylprednisolone, but they must be given promptly and carefully monitored. Long-term use of steroids can cause harmful side effects, such as collapsing vertebrae, muscle pain, diabetes, cataracts, and infection.
Primary angiitis of the CNS (granulomatous angiitis)The symptoms of this rare disorder develop slowly. Symptoms include headache and encephalopathy-like symptoms such as dementia and tremor. Stroke, TIA, and seizures can occur. Definitive diagnosis may require brain biopsy. Treatment includes steroid and immunosuppressive drugs, such as prednisolone and cyclophosphamide. It is fatal if left untreated.
Takayasu’s diseaseThis disease affects large arteries such as the aorta, which brings blood to the arms, legs, and head. It primarily strikes individuals of Asian descent and predominantly affects females under the age of 40. The main symptoms are fainting and visual disturbances and it may also cause stroke. Although the disorder is serious, the prognosis is positive: more than 90 percent of those diagnosed with Takayasu’s disease survive beyond a decade after diagnosis. Steroid drugs are used in the early phase of the disease, but some individuals become steroid-resistant and have to switch to cyclophosphamide or low-dose methotrexate.
Periarteritis nodosaThe onset of this rare and serious disease is generally between the ages of 40 and 50, but it can occur at any age. Men are three times more likely to develop the disease than women. Symptoms can mimic those of many other diseases, but the most common initial complaints are fever, abdominal pain, numbness or pain in the legs and limbs, weakness, and unexplained weight loss. As the disease progresses, the kidneys may fail and high blood pressure may develop rapidly. Certain drugs (for example, those in the sulfa family), vaccines, bacterial infections, and viral infections have been associated with the onset of the disease. Damage to the PNS with neuropathy is more common than damage to the CNS, but if the disease does involve the CNS, damage to brain and spinal cord tissue can occur.
The disease is treated aggressively with high doses of steroids and immunosuppressive drugs such as cyclophosphamide. Eighty percent of individuals who receive appropriate treatment are alive five years later. Untreated disease is often fatal, ending in heart failure, kidney failure, or failure of other vital organs.
Temporal arteritis (also called giant cell arteritis or cranial arteritis)Temporal arteritis is a common chronic inflammatory disease of large blood vessels occurring primarily in people 50 and older. It most often involves narrowing and sometimes blockage of the arteries that bring blood to the brain. Doctors will diagnose temporal arteritis if at least three of the following symptoms are present:
- new, severe headache
- visual disturbances
- pain in the jaw or tongue when chewing or swallowing
- tenderness in the temporal arteries (the arteries that run across the temples on either side of the head) or the scalp
Abrupt but reversible blindness is the most dramatic complication of temporal arteritis. About one in ten individuals with temporal arteritis will develop blindness in one eye, preceded by visual disturbances.Once one eye is affected, three out of four individuals will go on to lose vision in the other eye, most in two weeks or less.
The main goal of treatment for temporal arteritis is to prevent blindness. Most individuals respond well to steroid drugs, such as prednisone and methylprednisolone, but they must be given promptly and carefully monitored. Long-term use of steroids can cause harmful side effects, such as collapsing vertebrae, muscle pain, diabetes, cataracts, and infection.
Primary angiitis of the CNS (granulomatous angiitis)The symptoms of this rare disorder develop slowly. Symptoms include headache and encephalopathy-like symptoms such as dementia and tremor. Stroke, TIA, and seizures can occur. Definitive diagnosis may require brain biopsy. Treatment includes steroid and immunosuppressive drugs, such as prednisolone and cyclophosphamide. It is fatal if left untreated.
Takayasu’s diseaseThis disease affects large arteries such as the aorta, which brings blood to the arms, legs, and head. It primarily strikes individuals of Asian descent and predominantly affects females under the age of 40. The main symptoms are fainting and visual disturbances and it may also cause stroke. Although the disorder is serious, the prognosis is positive: more than 90 percent of those diagnosed with Takayasu’s disease survive beyond a decade after diagnosis. Steroid drugs are used in the early phase of the disease, but some individuals become steroid-resistant and have to switch to cyclophosphamide or low-dose methotrexate.
Periarteritis nodosaThe onset of this rare and serious disease is generally between the ages of 40 and 50, but it can occur at any age. Men are three times more likely to develop the disease than women. Symptoms can mimic those of many other diseases, but the most common initial complaints are fever, abdominal pain, numbness or pain in the legs and limbs, weakness, and unexplained weight loss. As the disease progresses, the kidneys may fail and high blood pressure may develop rapidly. Certain drugs (for example, those in the sulfa family), vaccines, bacterial infections, and viral infections have been associated with the onset of the disease. Damage to the PNS with neuropathy is more common than damage to the CNS, but if the disease does involve the CNS, damage to brain and spinal cord tissue can occur.
The disease is treated aggressively with high doses of steroids and immunosuppressive drugs such as cyclophosphamide. Eighty percent of individuals who receive appropriate treatment are alive five years later. Untreated disease is often fatal, ending in heart failure, kidney failure, or failure of other vital organs.
Are there additional vasculitis disorders that can cause neurological symptoms?
Other vasculitis syndromes include Kawasaki disease, which can cause stroke or encephalopathy in children; Churg-
Strauss syndrome; Wegener’s granulomatosis; systemic lupus erythematosis; scleroderma; rheumatoid arthritis; Sjogren’s syndrome; and Behcet’s disease.
Strauss syndrome; Wegener’s granulomatosis; systemic lupus erythematosis; scleroderma; rheumatoid arthritis; Sjogren’s syndrome; and Behcet’s disease.
What research is being done to better understand these syndromes?
The National Institute of
Neurological Disorders and Stroke (NINDS), a component of the National
Institutes of Health (NIH),
and other NIH institutes conduct
research relating to vasculitis syndromes in laboratories at the NIH and
also support vasculitis
research through grants to major
medical institutions across the country.
The NINDS supports The Vasculitis Clinical Research Consortium (VCRC), a network of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research and improving the care of individuals with vasculitis, including Wegener’s granulomatosis, microscopic polyangiitis, Churg-Strauss syndrome, polyarteritis nodosa, Takayasu’s arteritis, and temporal arteritis. The medical centers are located at Boston University School of Medicine, Cleveland Clinic Foundation, The Johns Hopkins Vasculitis Center, and Mayo Clinic College of Medicine. The Consortium’s internet site provides information about clinical research and clinical trial opportunities and helps individuals connect with expert doctors and patient support groups.
The NINDS supports The Vasculitis Clinical Research Consortium (VCRC), a network of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research and improving the care of individuals with vasculitis, including Wegener’s granulomatosis, microscopic polyangiitis, Churg-Strauss syndrome, polyarteritis nodosa, Takayasu’s arteritis, and temporal arteritis. The medical centers are located at Boston University School of Medicine, Cleveland Clinic Foundation, The Johns Hopkins Vasculitis Center, and Mayo Clinic College of Medicine. The Consortium’s internet site provides information about clinical research and clinical trial opportunities and helps individuals connect with expert doctors and patient support groups.
Where can I get more information?For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:
BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov
Information also is available from the following organizations:
| American Autoimmune Related Diseases Association 22100 Gratiot Avenue Eastpointe, MI 48021-2227 aarda@aarda.org http://www.aarda.org  Tel: 586-776-3900 800-598-4668 Fax: 586-776-3903 |
National Organization for Rare Disorders (NORD) 55 Kenosia Avenue Danbury, CT 06810 orphan@rarediseases.org http://www.rarediseases.org Tel: 203-744-0100 Voice Mail 800-999-NORD (6673) Fax: 203-798-2291 |
| National Eye Institute (NEI) National Institutes of Health, DHHS 31 Center Drive, Rm. 6A32 MSC 2510 Bethesda, MD 20892-2510 2020@nei.nih.gov http://www.nei.nih.gov Tel: 301-496-5248 |
National Institute of Allergy and Infectious
Diseases (NIAID) National Institutes of Health, DHHS 6610 Rockledge Drive, MSC 6612 Bethesda, MD 20892-6612 http://www.niaid.nih.gov Tel: 301-496-5717 |
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Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
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NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.
All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.
Last updated February 7, 2012
