August 18, 2003
Meridian teen finds diagnosis, treatment for rare disorder at Methodist Rehabilitation Center
By Lisa Uzzle Gates
Health and Research News Service
MERIDIAN, Miss.—After more than a year of visits to physicians, Internet searches and various medicines and therapies, Pam and Troy Dew were still searching for a someone who could tell them why their 18-year-old son was losing strength in his left hand.
“There is no way to describe what that was like. It was such a frantic time in our lives,” Pam Dew of Meridian said. “When they start giving you answers, there is some relief and it does ease your mind, but then there are a lot of other questions.”
After many referrals, they found their answer at the Center for Neuroscience and Neurological Recovery (CNNR) at Methodist Rehabilitation Center in Jackson. Kristopher Dew was diagnosed with a rare disorder—a multi-focal motor neuropathy (a disease or abnormality of the nervous system) that occurs when the immune system attacks the nerves in an area of the body, resulting in muscle weakness and atrophy.
“You don’t want to hear rare. There are so many thoughts that go through your mind. The last two years have been very difficult,” Pam Dew said.
It was the fall of 2001 when a family friend who is a medical doctor noticed Kristopher’s hand and arm, which had lost muscle tone. He recommended they have it looked at right away.
The deterioration started gradually. It wasn’t painful and Kristopher first noticed it when he had trouble reaching for keys on the computer keyboard. He didn’t think much of it, and since it wasn’t his dominant hand, it wasn’t that inconvenient.
“By the time we realized there was a problem it had gotten drastic,” Pam Dew said. “You don’t think to check an 18-year-old for something like this.”
They saw numerous doctors and got a few misdiagnoses, including having an unnecessary surgery. Each time Kristopher hoped they had the answer. “I was getting disappointed because I couldn’t find out what was wrong anywhere. I wanted a diagnosis and help, and quick,” Kristopher said.
The Dews were referred to Dr. Art Leis, a neurologist and senior scientist at the CNNR. “Dr. Leis was the biggest piece of the puzzle,” Pam Dew said.
When a doctor at the University of Texas in Dallas confirmed Leis’ diagnosis, the Dews began to rest a little easier, but they knew that was just the beginning.
“It encouraged me to seek further help because then I knew there was a possibility that I could have a full recovery over a period of time,” Kristopher said.
While it took some time to arrive at the diagnosis, Leis said the average time frame for a diagnosis like this is four to six years. “It’s a very difficult condition to diagnosis early on. The burden lies on the physician to make sure we are not dealing with a number of other conditions that can present with similar symptoms,” Leis said.
Leis called in colleague Mark Ross with the Mayo Clinic in Scottsdale, Ariz. Leis and Ross had known each other for years, and Leis knew he was very knowledgeable when it came to treating this type of neuropathy.
Ross, who does a lot of work with patients who have Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s disease, said while Kristopher’s case is similar to ALS, there are vast differences. The primary one being ALS progressively gets worse, where Kristopher’s neuropathy has remained in one area and, most importantly, he could see a full recovery.
“This particular disorder is more common in young men than older individuals, though it can affect all ages,” Ross said.
If left unchecked, the neuropathy will get worse, but with therapy and various treatments Kristopher could have a substantial or possibly complete recovery, Leis said.
One of those treatments is intravenous immune globulin infusions (IVIG). Kristopher’s case is the first time the infusions have been used at Methodist. Kristopher has seen minimal side effects, a good sign, says Leis. “It’s important that the patient can tolerate the medicine. The fact that he did so well after the first round is encouraging. He has passed the first hurdle. We’ll continue to assess him in the next few months and we hope to see improvements,” Leis said.
He got an intense round of the medication in July and will receive follow-up injections once a month for four months. The injections are made up of antibodies collected from hundreds of healthy human donors and have been found to be effective in treating a number of immune-related conditions. Doctors and researchers are not exactly sure why the injections work, but Leis said it appears the injections of the healthy antibodies block the bad antibodies and prevent them from continuing to damage the nerves.
Kristopher stayed busy this summer working and traveling, including a trip to Washington D.C. where he competed in a national art competition. “It was awesome,” Kristopher said. “We went sightseeing and I had a lot of fun with my friends.”
He will attend Meridian Community College this fall where he will major in graphic design. When he’s not studying or working, Kristopher enjoys a variety of sports, including tennis and skiing. He said the problems with his hand haven’t affected those activities, but he’s ready to get back full use of it.
“I’m determined to get better,” he said. Physical therapists worked with Kristopher and taught him exercises he does at home to help him regain strength in that hand.
Pam Dew encourages people in similar situations to be diligent in their choice of doctor.
“Search for someone who is an expert in the area of need and get a second opinion,” she said. “Doctors are human too, and mistakes can occur. We have found doctors with this expertise, and I am very comfortable with the diagnosis as well as the prognosis. Our team of doctors and nurses at Methodist could not be more accommodating and knowledgeable, concerned and comforting. It makes going thorough this crisis in our life much easier.”
A team of physician-scientists at the Center for Neuroscience and Neurological Recovery at Methodist Rehab work to translate basic neuroscience research into useful therapies that benefit patients suffering from neurological illnesses and injuries. By building on this hospital’s reputation and strong commitment to research, our physicians are able to quickly move research findings from the laboratory to the patient’s bedside, thus bridging the gap between biomedical discoveries and their clinical application.
Last year, CNNR researchers were the first in the world to discover West Nile virus attacks the spinal cord and can cause acute flaccid paralysis similar to polio.
Registered nurse Pat Sebrell and Dr. Mark Ross, of the Mayo Clinic in Scottsdale, Ariz., look on as Kristopher Dew does a strength test while receiving an IVIG injection at Methodist Rehabilitation Center in Jackson. Dr. Ross consulted on Krisotpher's case with Dr. Art Leis, neurologist and senior scientist with the Center for Neuroscience and Neurological Recovery at Methodist.