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ALS gets renewed attention thanks to Ice Bucket Challenge

Amyotrophic lateral sclerosis or ALS

Have you been challenged to do the Ice Bucket Challenge™ yet?

If not, it's probably headed your way. It’s a social media craze that's sweeping the Internet. 

The Ice Bucket Challenge was created to raise awareness and funds for Amyotrophic lateral sclerosis or ALS. The premise of the challenge is dare nominated participants to be filmed having a bucket of ice water poured on their heads and challenging others to do the same. Those who are nominated to do the challenge have 24 hours to comply or forfeit by way of a charitable financial donation.

I was recently challenged by the daughter of a friend and took my turn getting drenched in ice water.

While it’s been a lot of fun watching celebrities, everyday people and even presidents get drenched with water, you might wonder what all the fuss is about.

According to the ALS Association, ALS, sometimes referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease of the motor neurons in the brain and the spinal cord. Approximately 5,600 people in the US are diagnosed with the disease each year, and the incidence of ALS is two per 100,000 people.

Most people diagnosed with ALS tend to between the ages of 40 and 70, with an average age of 55, although younger patients in the 20s and 30s are also seen.
We asked Marvin Sih, MD, a neurologist with Via Christi Clinic, to give us some background on the disease.
“ALS is a motor disorder that leads to the weakening of the muscles,” Dr. Sih says. “There is no pain or numbness associated with the disease itself, although it may come later as complications set in, such as spasticity. In fact, if pain or numbness is prominent early on, it usually is not ALS.”

It usually is a sporadic disease, but ALS can sometimes run in families.  

"While there are genes that have been implicated in the disease, testing for them is not yet ready for prime time," Dr. Sih says.
According to Dr. Sih, there’s no known cure at the present time. There is currently only one drug, riluzole (which has the generic name of Rilutek), that is FDA-approved for the disease. At best, the drug may be able to delay the progression of the disease by only a few months.
Some of the symptoms of ALS to look for are:

  • Muscle weakness in the arms, hands, feet and legs
  • Persistent painless muscle twitching
  • Difficulty swallowing or choking
  • Difficulty in speaking clearly

ALS can be difficult to diagnose.  There isn’t one specific test that’s used and there are many conditions which can mimic ALS.

In diagnosing the disorder, a thorough history and physical examination by a neurologist familiar with the condition is vital.

Other tests that may be performed to help exclude other conditions are:

  • Blood and urine tests
  • Spinal tap
  • X-rays and MRI
  • Rarely muscle or nerve biopsy

“If a patient comes to us with a constellation of symptoms of weakness, in the proper clinical context, with a neurologic examination suggestive for motor neuron disease, the next step is Electromyography/nerve conduction testing,” Dr. Sih says.  

Electromyography/nerve conduction testing (EMG/NCT) is a neurologic test that provides information about the function of the muscles and the nerves in your body.

"The goal of EMG/NCT is to determine where in the problem is in the peripheral nervous system, and how severe the problem is," Dr. Sih says. "It is helpful in diagnosing a variety of conditions, not just ALS."
During nerve conduction testing, small electrodes are placed on the skin over nerves being tested in your arms or legs. A stimulator then delivers tiny electrical currents to the skin near nerves being tested, causing the nerves to be stimulated. The electrical signals produced by nerves are then picked up by other sensors, which are then graphed and analyzed with a computer.

During electromyography, a small diameter needle is inserted into various muscles in the arm, leg, neck muscles or back muscles, depending on your symptoms. The signals picked up by the needle are then sent into a specialized computer and changes them into visual and audio signals so the physician can "see" and "hear" how the muscles and nerves are working.

"Many times, we encourage seeking a second opinion with another neurologist," Dr. Sih says. "A presumptive diagnosis of ALS is serious. We try and hope to find an alternative diagnosis to explain the symptoms, as there is currently no cure for ALS."

Dr. Sih thinks the current interest in ALS due to the Ice Bucket Challenge is a good thing for the medical community.
“I think the fact that the Ice Bucket Challenge has raised awareness for ALS is great," Dr. Sih says. "There are a lot of people who don’t know much about this disease and a lot of things we don't know about the disease. This social media challenge will hopefully change that, and help raise funds for ALS research."

About Maria Loving

Maria is a coordinator of the Via Christi Life news site and has worked for Via Christi Health for 16 years. She is the mother of two teenage boys.