May 29, 2009 7:28 pm US/Eastern
Go! New York Health Watch: Neuropathy
NEW YORK (CBS) ―
Millions of Americans experience severe pain and even paralysis as a result of a syndrome that some say doesn't even exist. Now, some of those patients are working to increase awareness about the condition, neuropathy, so a cure can be found.
Only neuropathy patients themselves can best describe the sheer pain that the conditions causes.
"If you could imagine a thousand bees stinging you at the same time," says patient Steven Smith.
For patient Mary Robertson, she described it as feeling like she was "starting to walk on sticks and stones and glass."
Stephanie Cion said she likened the pain to "torture," saying she felt "burning, numbness, this feeling of electricity."
These are some of the many faces of the little-understood illness.
"I developed a lot of pain in my legs, excruciating pain, and I went to three different neurologists citywide and none of them could find out what was wrong," said Smith.
Neuropathy is a disorder of the peripheral nerves. Those nerves are responsible for movement and feeling in the arms, legs, hands, and feet. The syndrome causes weakness, tingling, and at times, severe pain. The Neuropathy Association estimates more than 20 million Americans suffer from it. One of the aspects of neuropathy that makes it so difficult to diagnose is that the symptoms differ from patient to patient. Some people have just a subtle tingle in one foot while others suffer complete paralysis.
"Some folks have problems with walking because of it, some folks have problems with balance," sayd Dr. Joel Delfiner, Chairman of Neurology at St. Luke's Roosevelt Hospital.
Diabetes and other illnesses can often lead to neuropathy, but for many, the cause remains a mystery. For younger patients, convincing others that they are really in pain can be difficult.
"You don't look sick, so people sort of wonder how sick you can really be," said Cion.
"Many physicians have said 'Oh neuropathy, there's nothing to do.' Well there's a lot to do now. Not every person with neuropathy has an incurable illness or a untreatable illness," said Dr. Delfiner.
Options are increasing, but right now an intravenous therapy called "immunoglobulin" is one of the most common treatments.
For Robertson, spreading the word and supporting others has made all the difference.
"I'm a support group leader now which is the best thing that's really help me helping other people," she said.
If you experience symptoms of numbness, tingling, or pain on a regular basis, check with your doctor. A thorough neurologic exam can shed light on the illness early and the sooner the treatment is started the better.
Some studies suggest that as many as 8 percent of adults suffer from some sort of neuropathy. For more information, visit http://www.neuropathy.org/site/PageServer.
(© MMX, CBS Broadcasting Inc. All Rights Reserved.)
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