Kelly Parish knows from personal experience how scary multiple sclerosis (MS) can be. In the past, Kelly's MS attacks have left her temporarily blind in one eye; caused numbness throughout her body while she was pregnant; threw off her balance and coordination; and put her in a wheelchair due to muscle weakness in her legs.
But now, using a treatment plan that focuses on her individual needs and the way the disease affects her body, Kelly and her Mayo Clinic doctors have her MS under control, and they plan to keep it that way.
Diagnosed with MS in her late 20s, Kelly initially had only one or two MS attacks each year that showed any noticeable symptoms.
"After the first three or four attacks, I rebounded without too much trouble. For a while, I wasn't on any medication," she says. "As time went on, I kept having attacks, and some of them were pretty bad. That worried me."
According to Brian Weinshenker, M.D., Kelly's Mayo Clinic neurologist, her worries were well-founded. "It's never good when we see patients continuing to have attacks. Even though they may recover well, the attacks leave scars in the brain and spinal cord," he says. "With time, those scars can build up and cause long-term disabilities."
For four years after being diagnosed with MS, Kelly's physicians at Mayo monitored her closely without any medication. As her attacks continued, they recommended she consider treatment.
"When Dr. Weinshenker told me about a clinical trial at Mayo that compared the standard MS medication with a new treatment that might be more effective, that seemed like the way to go," says Kelly. "I was excited when I found out I was assigned to the group of patients who got the new drug."
Participating in the year-long study proved to be a good choice. Kelly didn't have any attacks during that time, and she was able to continue taking the new drug, Rebif™, once the study concluded.
In the winter of 2002, after two quiet years, Kelly unexpectedly experienced a major MS attack that left her right side weak. The following summer, her condition continued to get worse. One major attack after another hit, and Kelly's body couldn't bounce back. The medication seemed to offer little help. Steroid treatments, given to MS patients after an attack to help them rebound, did no good. By September of 2003, Kelly's balance had been severely affected, and she couldn't use her right leg.
"That was the first time I'd ever missed work because of the MS," Kelly says. "I was not able to walk at all, and I had to use wheelchair. I was scared."
To Dr. Weinshenker, the change in Kelly's disease required a closer look. He wanted to determine exactly what was happening and how best to treat it. "Kelly's MRI at that time showed evidence of many new lesions on her brain and spinal cord, suggesting that the disease had gone into an aggressive, or transitional, phase when a person starts getting attack after attack and can't recover."
To battle this new stage of the disease, Dr. Weinshenker recommended Kelly switch to a different treatment: mitoxantrone, a relatively new chemotherapy drug for MS. Kelly agreed and began receiving the drug intravenously once every three months. That change has done the trick.
"After I started chemo, things got better again," says Kelly. "I progressed from the wheelchair to a walker to crutches to a cane, and now I don't use any aids. I'm back to working full-time again."
Both Kelly and Dr. Weinshenker know this latest treatment isn't a cure-all for her disease. "We can't leave Kelly on the chemotherapy indefinitely because, over time, it can be toxic to the heart," says Dr. Weinshenker. "We use mitoxantrone sparingly, and we only keep a patient on it for about two years. If we can use it to beat down the aggressive phase of the disease, then usually we can go back to other medications which are easier to tolerate."
This consistent, careful consideration of a patient's individual situation is critical to successfully managing MS, according to Dr. Weinshenker. "At Mayo Clinic, we are selective about the treatments we use, and we are honest with patients about when we think they can benefit," he says. "Kelly's story shows how we have different options at different levels of the disease. It shows that if you properly select the right treatment for the right individual, the results can be good."
Treatment must be tailored to match patients' disabilities, where they fit in the course of the disease, and which drugs are most likely to work for them. Dr. Weinshenker adds, "MS is not a disease in which you can lump everyone together, treat all patients the same way and get the same results."
From Kelly's perspective, having physicians who are willing to take time to get to know her and understand her situation has made the difference. "I would tell others who have MS to talk to their doctors about exploring all the options out there. They might be surprised at what they find," she says. "I thought chemotherapy was only for cancer, but now it's helping me with my MS. People need to figure out a plan of care that will work best for them. I'm proof that, even with MS, you can have a good quality of life."