A first person account of coping with this unfamiliar condition.
"Oh no, not again," was my initial reaction when the doctor informed me of my latest diagnosis. Having successfully coped with years of surgery, braces, wheelchairs and rehabilitation, and being a nine-year cancer survivor, I didn't how well I'd handle living with yet another disease.
For three years, denial of my symptoms had exacerbated to the point that I finally landed in the neurologist's office. Intensive detective work on his part gave me the name for the increasing numbness, pain and parasthesias that were affecting my feet and hands-peripheral neuropathy.
Determining the Cause
Diabetes is a major cause of neuropathy, accounting for about one-third of cases. Other lesser known, but common causes are the result of alcoholism and metallic poisons, as well as nutritional deficiencies. Radiation treatments can sometimes trigger neuropathy years later.
Since my cancer was treated with surgeries, radiation was ruled out as a cause. Because no cause could be found, I—like one-third of all people living with neuropathy—was diagnosed with idiopathic peripheral neuropathy.
Norma Latov, MD, PhD, medical director of the Neuropathy Association said in a recent article that "having idiopathic neuropathy is a bit like being in between limbo and purgatory; You're not quite sure how you got there or when it will ever end."
Since it is not always recognized, peripheral neuropathy has been called "the silent disease". Though not a rare condition, it is listed in the National Organization for Rare Diseases because of the many requests for information that the organization receives. Information on peripheral neuropathy is hard to come by and is not often written about in lay publications. It has been estimated that about two million persons in the United States live with this disorder.
Polyneuropathy is an umbrella term for most neuropathies. It means that the condition is diffuse and symmetric usually beginning in the hands and feet. Some neuropathies develop gradually over many years while others have a sudden onset.
Signs of Polyneuropathy
There are many symptoms related to this disorder. Below are a few that are more prevalent:
- Weakness. Involves damage to motor nerves. Symptoms in the lower extremities include difficulty in walking or a "heavy" feeling requiring extra energy to climb stairs, stumbling or early fatigue. In the upper extremities, symptoms include difficulty with ADL, such as carrying, opening jars, doorknobs, combing hair and dropping things.
- Parasthesias. Includes numbness; tingling; pins and needles; prickling; burning; coldness; sharp, deep stabbing pains; electric shocks or buzzing sensations, usually worse at night; formication (abnormal sensation of insects crawling over or into the skin).
- Dysesthesias. Unpleasant, abnormal sensations caused by touching the affected areas of the body.
- Anesthesia. Total or partial loss of sensation may cause cuts, bruises or burns to occur.
- Loss of position sense. Persons experiencing this symptom may not be sure of where their feet are. This results in the person appearing uncoordinated or walking a widened base or an unsteady, ataxic like gait.
- Glove or stocking sensation loss.
- Automatic dysfunction. May cause dizziness when rising from a chair, constipation, diarrhea, sexual dysfunction or skin fragility resulting in easy bruising and slow healing. Vasomotor and trophic disturbances may also occur, notable nail changes, loss of perspiration and occasional hair loss over dermatomes in the leg.
Though a PN diagnosis is difficult it can be made through a careful history, neurological examination, EMG and nerve conduction studies, nerve and muscle biopsy, spinal tap, blood and blood and urine tests.
Idiopathic neuropathies are mostly sensory-related and associated with degeneration of the axons rather than the myelin sheaths. Idiopathic small fiber sensory neuropathy can be particularly difficult to recognize or diagnose. Although it can cause hypersensitivity and severe pain, neurological exams often show minimal loss of sensation. EMG and nerve conduction tests which exam large fibers only can also be performed. Unfortunately, the diagnosis may still be missed resulting in a misdiagnosis of hysteria or depression.
Misdiagnosis of PN can lead to a vicious cycle which includes delay in seeking and procuring proper treatment. Early diagnosis is important, since the less damage that occurs the better the prospects of recovery.
OT and PT can slow, halt or reverse the neurological damage of PN. Once damage is stopped nerves can regenerate although complete recovery may not always occur. Orthotic devices can help maintain strength and function. In my case, wrist and hand splints are helping me type and operate my motorized wheelchair.
Controlling pain from neuropathy is not easy. Some find relief with low doses of the antidepressant Elavil (25-50 mg.) at bedtime. Capsaicin cream, an extract of the pepper plant, is sometimes helpful. The irritation of the pepper acts to deplete the supply of a nerve transmitter known as substance P.
Neurontin, a drug originally developed as an anti-seizure medication, has also been used with some success. A study in the Dec. 2, 1998 edition of the Journal of the American Medical Association showed that the drug, especially in cases of diabetic neuropathy, has given some relief and is also used in idiopathic PN. Topomox, another anti-seizure drug is also being used in some cases.
Ruth Krinsky, OTR/L, MA holds degrees in journalism and occupational therapy. She is a field correspondent for ADVANCE.