Tuesday, August 25, 2009

VA's 'You have ALS' Letter Stuns, Scares Vets

August 25, 2009
Military.com|by Bryant Jordan

Nodya "Gale" Reid of Montgomery, Ala., read the Veterans Administration letter in her hand, not believing at first it was meant for her.

She checked the name again and the Social Security number. It was her.

And she kept reading the first sentence over and over: "According to records of the Department of Veterans Affairs (VA), you have a diagnosis of amyotrophic lateral sclerosis."

Her heart dropped.

According to the ALS Association Web site (www.alsa.org), ALS, better known as Lou Gehrig's disease, is a neurodegenerative disease that destroys nerve cells in the brain and spinal cord, eventually taking away all motor abilities. Life expectancy is typically two to five years.

"I began crying. I was grief stricken," Reid, a former Air Force staff sergeant, who already has a service connected disability, told Military.com in a phone interview.

But Reid's fear was unnecessary. As it turns out, the VA letter diagnosing her with Lou Gehrig's disease was a terrible mistake. And Reid wasn't alone in her scare. The same letter went out to about 1,200 veterans on August 11.

VA officials have not yet replied to Military.com's request for information on the letter. According to Veterans for Common Sense and the National Gulf War Veterans Center, both of which have been alerting vets of the bogus letter, some vets may already have spent thousands of dollars on unnecessary tests to see if they had the deadly disorder.

The Gulf War Center is calling for the VA air public service announcements admitting to the error.

"The VA has an obligation to go on television and make public service announcements to prevent veterans from becoming overly alarmed," GWC President Jim Bunker wrote. "In addition, each veteran that was notified should be rescreened by the [VA] for neurological issues that are undiagnosed."

Reid thought that panicked veterans -- shaken or depressed by the letter diagnosing them with the deadly ailment -- would even consider committing suicide.

"I discussed this with a nurse friend of mine," Reid said. "Somebody in a fragile state of mind, they might think that [ALS] is not how they want to leave the world."

Another veteran, former Army Sgt. Brent Casey, a medic with the 82nd Airborne during the Persian Gulf War, agrees. He learned of the letter's contents on the phone, when his mother called to tell him he had a letter from the VA. As usual, he told her to open it and read it to him.

He was stunned and had to pull off the road, he said. A series of phone calls followed with a VA official.

"For 24 hours I thought I had ALS," he told Military.com. "You contemplate suicide - I knew I had only three to five years to live." Recalling his last conversation with the VA official, he said: "My words to him were, 'I'm so glad it's a mistake, but what about the other veterans who are not having this conversation or getting this explanation?' "

Casey said it has been about two weeks since the letters went out, and yet the VA has not been on TV to alert people who need to know.

"I just can't understand how the days and hours keep passing by and it's not happening," he said.

"Based on the calls we've received and the emails, there are clearly some very anxious and irate veterans out there," said Paul Sullivan, executive director for Veterans for Common Sense. "The VA needs to ensure that any costs incurred are covered."

Reid is one of those vets, in fact. She told Military.com she went to her primary physician with the letter, and though that doctor doubted Reid had ALS, the doctor referred her to a neurologist anyway.

Reid saw the neurologist, who administered some blood tests and an MRI. She also was subjected to "nerve conductivity" tests that used electrodes to shock her in about 20 different places.

"It was very, very painful," she said.

And in the end, the results indicated she did not have ALS.

"I'm keeping a running tab now of what it costs for these tests," Reid said, who estimates the bill to be about $3,000.
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