Living with MS, clinical trial provides hope for Langseth
By Gretchen O'Donnell
WORTHINGTON — When Amy Langseth went to the doctor with an eye complaint, she had no idea of the ways her life was about to change.
“I thought I had early onset of glaucoma — I had the signs of it, and it was in my family,” she said. “They did some blood tests and sent me to Johnson Eye Clinic. They took a look at me and told me that my eyes were perfectly healthy, but since I had all these vision issues, they sent me to Dr. Hoevet to see what he had to say. He couldn’t find any problems, either.”
From there, Langseth went to a specialist at the University of Minnesota. He, too, said that her eyes looked just fine.
But they weren’t fine at all.
“The doctor was talking to me and suddenly he stopped and said, ‘What’s wrong with you?’” Langseth said.
The doctor had caught a glimpse of the sporadic facial twitch that Amy had had for years. She never was bothered by it — in fact, she didn’t even feel it — but for her doctor, it was a red flag.
“They kept me overnight, did an MRI, then sent me home to wait for the results,” Langseth recalled. “When he called me back, he told me he was 97 percent sure that I had Multiple Sclerosis [MS]. I had to go back for a spinal tap. It was horrible. I lay on the couch for 10 days recovering. My 9-year-old daughter, Bethany, asked me every day if I was going to die.”
Langseth and husband Dean’s other children — Joshua, 11 at the time, and Briana, then 7 — weren’t quite as upset by watching their mother crawl to the bathroom, but still, it wasn’t easy for any of them.
“My entire family was very supportive through the whole thing,” Langseth said. “My mother-in-law and my mom were great. When I got depressed, Dean would send me to visit my parents in Arizona for a week. It was a great distraction.”
It has been 18 years since Langseth’s diagnosis, and in that time both her mother and mother-in-law have passed away, but now her grown children and grandchildren are a wonderful support — not to mention her husband.
“I’d be lost without Dean,” Langseth said. “He is my rock. He’s been wonderful.”
The National Multiple Sclerosis Society defines MS as “a chronic, often disabling disease that attacks the central nervous system, which is made up of the brain, spinal cord and optic nerves.” The definition goes on to describe the “four courses of MS”. These different stages can be hard to define in a patient, but Langseth has definitely seen herself go from one stage to another.
“At first I had what they call relapsing-remittent MS,” she said. “For four years they had me on Solu-Medrol, which acts a lot like a steroid. That was about the only drug available at the time.”
But then a new medicine, Avonex, became available, which doctors hoped would help more with Langseth’s specific stage of MS. For several years she benefitted from Avonex, but then developed an immunity to it and had to go on yet another drug that ended up interfering with her liver. Finally she was put on Copaxone, which Langseth took until last fall when doctors told her she could continue it if she wanted, but it wasn’t doing her any good.
“About that time I entered the next stage of MS,” Langseth explained. “Secondary Progression. So far, there is not a medicine for that.”
As a result, Langseth has been on no medicines at all for the past year. But she does have hope for the future.
“I am in a clinical trial,” Langseth said. “It started in October of 2012. I went out then to Maryland — to the National Institute of Health — and have been out there three more times, in November, January and April. Now I’ll go again on Oct. 30th.”
The first year of the trial has been “preliminary stuff,” as Langseth called it. She and her husband go out to the hospital in Maryland and she undergoes procedures during the day, but they’ve been able to stay together at night at the Family Lodge close by.
The next trip will change all of that.
“I will have to stay at the hospital this time,” said Langseth, “because the medicines that I’ll be on have to go through my spine and they’ll have to monitor me. I’ll be there until Nov. 7th, then go home for 10 days, then go out to Bethesda again.”
Langseth’s life, for the next year, is completely scheduled. It is also, medically speaking, completely out of her control.
“I don’t know if I’ll be on the medicine or on a placebo,” she said. “We’re praying for the medicine.”
But Amy is not wasting time stressing about it.
“All my doctors tell me I have the best attitude about it,” Langseth said with a smile. “I am a pretty laid-back person — it doesn’t bother me too much. I’ve learned to just take what comes.”
The uncertainty of the trial — whether she’ll be on the actual medicine or a placebo — has never been a fear for her.
“It was not a hard decision to say ‘yes’ when they asked me to be on the trial,” she remembered. “Dean and I talked about it on the drive home [from her doctor in Golden Valley] and before we were home, we knew we wanted to do it. There’s a risk in everything, so why not?”
Langseth’s hope is that the new medicine will slow down the progression of the disease. She admits it would be nice if the medicine will improve her ability to walk as well, but she doubts that it will. As the official tourguide at Ocheda Orchard, she admits, too, that she now sits for her talks with the schoolchildren a lot more than she used to.
“They still let me do the tours and I love doing them,” Langseth said. “I can’t do all of the stuff at the orchard that I used to do. My legs give out, and I can’t stand for too long. I fall pretty easily. I usually use a cane to walk.”
While Langseth does have a walker that can convert into a wheelchair, she doesn’t much like using it.
“I’m not that old! I’m not even 50 yet!” she said, laughing.
Her eyes — the impetus for that first doctor’s visit — continue to give her trouble. Double vision, blurriness and a period of near-blindness have all taken their toll.
“My eyes are doomed,” Langseth admitted.
But, despite owning up to the fact that her eyesight was the last thing she ever wanted to lose, she is not feeling sorry for herself.
“Whatever is given is given. God is in control, so why worry?”
For more information on MS, visit http://www.nationalmssociety.org/index.aspx