UPDATE: Sorry I could not be here. Irene demanded our attention and took our power until 20 minutes ago (9:10 EDT Sunday). I am exhausted from generator tending and switching back to normal power. I will be back tomorrow night. I have to get up early to go to Richmond with my wife for her breast cancer surgery consult.
I am 75 and have had idiopathic peripheral neuropathy for at least 30 years. It has been progressive. Three of my colleagues, who also had offices near me in the Medical Sciences Building also have it. At least one has lost a digit on his foot. Being faculty in a Medical College you would expect that we know all there is to know about our disease. In fact, we know almost nothing. I will share what I do know below.
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Let's start with some background information:
By Mayo Clinic staff
Peripheral neuropathy often causes numbness and pain in your hands and feet. People typically describe the pain of peripheral neuropathy as tingling or burning, while they may compare the loss of sensation to the feeling of wearing a thin stocking or glove.
Peripheral neuropathy is caused by nerve damage. It can result from such problems as traumatic injuries, infections, metabolic problems and exposure to toxins. One of the most common causes is diabetes.
In many cases, peripheral neuropathy symptoms improve with time — especially if it's caused by an underlying condition that can be treated. A number of medications are often used to reduce the painful symptoms of peripheral neuropathy.
The causes can be many:
It's not always easy to pinpoint the cause of peripheral neuropathy, because a number of factors can cause neuropathies. These factors include:
Trauma or pressure on the nerve. Traumas, such as motor vehicle accidents, falls or sports injuries, can sever or damage peripheral nerves. Nerve pressure can result from using a cast or crutches, spending a long time in an unnatural position, or repeating a motion many times — such as typing.
Diabetes. When damage occurs to several nerves, the cause frequently is diabetes. At least half of all people with diabetes develop some type of neuropathy.
Vitamin deficiencies. B vitamins — B-1, B-6 and B-12 — are particularly important to nerve health. Vitamin E and niacin also are crucial to nerve health.
Alcoholism. Many alcoholics develop peripheral neuropathy because they have poor dietary habits, leading to vitamin deficiencies.
Infections. Certain viral or bacterial infections can cause peripheral neuropathy, including Lyme disease, shingles (varicella-zoster), Epstein-Barr, hepatitis C and HIV/AIDS.
Autoimmune diseases. These include lupus, rheumatoid arthritis and Guillain-Barre syndrome.
Other diseases. Kidney disease, liver disease and an underactive thyroid (hypothyroidism) also can cause peripheral neuropathy.
Inherited disorders. Examples include Charcot-Marie-Tooth disease and amyloid polyneuropathy.
Tumors. Growths can form directly on the nerves themselves, or tumors can exert pressure on surrounding nerves. Both cancerous (malignant) and noncancerous (benign) tumors can contribute to peripheral neuropathy.
Exposure to poisons. These may include some toxic substances, such as heavy metals, and certain medications — especially those used to treat cancer (chemotherapy).
In the case of the four of us, no one of these factors could be singled out as a common cause. The odds of this being chance are very small so it remains a mystery. We were given neurological and chemical tests but nothing was evident. Working in experimental medical science often exposes one to chemicals of all sorts. My office, in particular, was in a half bay adjacent to a histology lab. I was interested in the outcome of my tests for heavy metals especially because I eat a lot of fish. There was no sign of heavy metal poisoning and my mercury level was undetectable!
It has been tempting to do some far fetched speculation about my case. As I have said, I am not diabetic. Yet one thing I share with diabetics is a period of my life before I developed this disease when I had the equivalent of today's low carb diet. I ate lots of protein and was a marathon runner. I ran 50 miles a week on the average. At one point you could smell ketones on my breath. Ketones are a by product of The metabolism that burns fatty acids and proteins in place of sugar. From Wikipedia:
Ketonuria is a medical condition in which ketone bodies are present in the urine.
It is seen in conditions in which the body produces excess ketones as an alternative source of energy. It is seen during starvation or more commonly in type I diabetes mellitus. Production of ketone bodies is a normal response to a shortage of glucose, meant to provide an alternate source of fuel from fatty acids.
No doctor has ever considered this a possible cause so I leave it at that.
Another possiblity is genetics. My mother died of a head injury from a fall in the shower. If I close my eyes I will fall. My father also had signs of some of the problems I have walking. We did not know of peripheral neuropathy while they were alive so who knows?
Here is a source for those whose neuropathy comes with diabetes I have mentioned falling and pain of odd sorts above. Other complications include the tendency to develop ulcers, especially on the feet ultimately resulting in loss of digits, feet, or even limbs if not cared for. My wife has been having foot ulcers from her diabetes (type II) associated neuropathy. One untreated ulcer ended up as a Staph infection that finally lodged in her spine and almost killed her. Needless to say she now cares for her feet with diligence.
I have another complication in the form of a Charcot foot. My left foot has problems in all its joints and the arch is collapsed. I have had ulcers there and eventually surgery to remove the bone projection in the instep causing the ulcers. So far so good. That was last march. Here is Wikipedia on this feature:Neuropathic arthropathy
Neuropathic arthropathy (or neuropathic osteoarthropathy), also known as Charcot joint (often "Charcot foot"), refers to progressive degeneration of a weight bearing joint, a process marked by bony destruction, bone resorption, and eventual deformity. Onset is usually insidious.
If this pathological process continues unchecked, it could result in joint deformity, ulceration and/or superinfection, loss of function, and in the worst case scenario: amputation or death. Early identification of joint changes is the best way to limit morbidity.
So you can see that what may start out as an annoying syndrome can have serious consequences. I walk with a cane all the time now. I also wear custom made shoes suited to my deformed and sensitive feet. These cost around $900.00 a pair and, since I am not diabetic, are
not covered by medicare. If I were unable to pay for them I'd probably loose my feet and then medicare would pay for that!
I will stop now. The odds are good that hurricane Irene will have passed by now and if the power is on I await your thoughts. Thanks for "listening".