Editor’s Note: March is Multiple Sclerosis Awareness Month.
Martha Imes was playing zombie paintball with her family in 2016 in Nashville, Tennessee, when she realized something was off.
Both of her feet were numb.
At first, she ignored it and didn’t tell anyone. But as days turned into two weeks, there was no change. She finally told her husband, Dispatch publisher Peter Imes, who encouraged her to have it checked out.
Imes’ nurse practitioner recommended an MRI, which revealed scarring on her brain, and Imes was referred to a neurologist in Birmingham, Alabama.
It wasn’t long after that she learned what was causing the damage. Imes had multiple sclerosis, an auto-immune disorder that affects the central nervous system.
“Initially, I didn’t know much about it,” said Imes, the first in her family to have MS. “I don’t think I really felt much emotionally until the neurologist confirmed it. At that point, I realized it was a lifelong diagnosis. It left a lot of uncertainty, which for me, I don’t operate well outside of things that aren’t predictable.”
The next four years were anything but predictable for Imes.
At first, she tried disease-modifying medications — the commonly accepted treatment for MS — that caused weight-gain and depression. While it slowed the disease’s progression, her neurologist classified her first regimen as a failure due to concerns over the side effects.
Then Imes’ disease progressed rapidly.
“My brain would stop talking to my hands while unloading the dishwasher, so I would drop dishes,” she said. “My fatigue was really bad. There would be days I would have to choose just one thing I was going to do that day — things as simple as taking a shower would have to be followed by taking a really long nap.”
By 2020, Imes was falling. She had started using a cane or walker to get around. On vacations, she would often stay in the hotel while her husband and two children went out. Even basic things were becoming less possible.
Something had to change.
“What I was doing wasn’t sufficient. My quality of life wasn’t sufficient,” Imes said. “I could not participate with my kids like I always had. Just going to watch my daughter play soccer was too much. There were times I had to sit in the car and watch. It was hard just watching life pass me by.”
Treatments, approved and not approved
Dr. Alissa Willis didn’t know anyone with MS until her fourth year of medical school when shadowing a doctor with 20 such patients.
The Jackson native thought having that many patients with the same diagnosis would make for easy rounds. She was wrong. Everyone’s symptoms were different.
“I found out I didn’t know anything about MS,” Willis said. “The textbooks only scratched the surface.”
The experience plotted Willis’ career path, however. After a fellowship at the Cleveland Clinic, she became an MS specialist in 2011. Eight years later, she returned to her hometown as chief of neurology at the University of Mississippi Medical Center.
MS can attack the brain, optic nerves or spinal cord, Willis said, and symptoms can vary based on the location of the attack. Those symptoms can range from blurred vision to pain and fatigue to mobility issues, even trouble with bladder and bowel function.
About 1 million people in the U.S. are living with the disease, Willis said, and it is easy to diagnose with an MRI. The problem is many people aren’t diagnosed until the disease has significantly progressed, meaning treatment may be less effective.
There are 25 disease-modifying medications on the U.S. market for MS, Willis said, five times the number there were 11 years ago. Most are short-term solutions that have to be changed intermittently, but Willis said newer drugs are showing more long-term promise.
“Now, it may be the only drug a patient ever takes or at least can be taken for a very long time (before it has to be changed),” she said.
There are limitations to the medicines. There’s not a one-size-fits-all, so some patients have to try several to see which one works best. They also tend not to improve patients’ conditions.
“What our treatments don’t do well is repair damage that has already happened,” she said. “Part of that is a lack of understanding in pathology — what’s really happening on a microscopic level.”
A controversial treatment, and one not practiced widely in the U.S., has entered the fray.
Hematopoietic stem cell transplantation, a treatment used successfully for certain cancers, is gaining traction internationally as a treatment for MS. It employs chemotherapy, removing stem cells from the blood and giving them back to a patient. Clinical studies performed in the U.S. show the treatment is effective for those in early stages of MS, Willis said, but the U.S. Food and Drug Administration has yet to approve it as a front-line treatment. Outside of a clinical trial, it can only be used after all other treatment options are exhausted, often after the disease has progressed so far even the stem cell transplant won’t help.
That leaves places like Russia and Mexico to perform the treatment outside of clinical trials.
“One of the concerning things when you go out of the country is what type of protocols those clinics use,” Willis said. “Another issue (with stem cell therapy generally) is how bad does a person have to be to take the risk for that treatment because the chemo crashes your immune system before you receive the stem cells. The debate is, ‘what are the advantages of that treatment compared to the medicines?’”
Worth the risk
For Imes, it was definitely worth the risk.
She missed the window for a clinical trial in Chicago, but after extensive research scheduled a trip to Moscow for April 2020 to receive the treatment from Dr. Denis A. Fedorenko, a doctor who pioneered it. A month before she was supposed to leave, the COVID-19 pandemic shut down most international travel. Russia was no longer an option.
Eventually, if not hesitantly, she turned to a clinic in Puebla, Mexico, run by Dr. Ruiz Argüelles, who studied at the Mayo Clinic.
Despite her stateside neurologist cautioning her the treatment was “drastic,” she took her first two rounds of chemo in November 2020 in Puebla, where she said protocols were well executed. Shots to mobilize her stem cells followed, then “something like a dialysis machine” extracted the stem cells from her blood. After seven days, those stem cells were transplanted back in her blood.
“At that point, you’re considered Day Zero,” Imes said. “That’s your new birthday.”
She took more chemo and more shots to boost stem cell production and was released. Imes stayed in Nashville with her sister for the next three months, away from her husband and children and less than 20 miles from her hematologist.
“They tell you not to celebrate until you reach 100 days of survival,” she said.
Getting personal
Candi Vezina was living in Washington in 2001 when she started having double vision. By November that year, an MRI showed she, too, had MS.
For the first several years, the Columbus native’s symptoms would flare up and get better. By 2009, her left foot would not pick up. Over the ensuing six years, she began using aids to walk and has been confined to a power wheelchair since 2018.
She continued working, landing a job at Columbus Air Force Base after she moved back home in 2003. She was working as a receptionist at Columbus Nissan when COVID came, forcing her to quit since MS compromises a patient’s immune system.
Vezina has rotated through five medications since her diagnosis, the most recent a twice yearly injection that, if she did not have insurance, would cost up to $100,000 per dose, she said. Before her MS reached “secondary progressive” status, she considered joining a stem cell treatment clinical trial but decided it was too risky.
“It’s not all bad,” Vezina said, keeping a positive attitude. “I’m thankful I have good insurance along with Medicare. I also have a good support network. … For me, it’s about perseverance and ingenuity. If you think about (MS) too long, you get depressed.”
But starting a few years ago, Vezina started posting on Facebook each day in March — MS Awareness Month — about her struggles with the disease. She wants people to know more about the effects of MS and also offer support and encouragement to others suffering from it.
“I want to get more personal and intimate each year with what I’m going through,” she said.
The future
Imes has done something similar, though her story, for now, is a little different.
On the 10-point MS disability scale, she entered stem cell treatment at a 4.5 (moderate). After recovery, she’s at 2.5 (minimal but with some fatigue).
She’s cooking dinner, driving at night, and living with a normal schedule and normal bedtime.
On spring break earlier this month, Imes even went skiing, though she admitted she “kind of sucked at it.”
“It was good to know I could try,” Imes said. “… They hope to freeze the disease where it is (with the transplant). Typically, 85 percent or so hold steady and don’t have any relapses. It’s been so life-changing in how we’re able to function as a family that I’m trying to be an open book to anybody who is considering the treatment or didn’t know about it.”
The usually introverted Imes has started an interactive website to tell her story and raise awareness for the stem cell treatment. She said it’s been well received, and it has spurred productive conversations with people suffering from the disease — even some who are starting fundraising campaigns for the otherwise cost-prohibitive international treatment.
“Most people with MS are ready for it,” she said. “You feel kind of desperate. You’re willing to take on the risk because you just want a normal life. It’s important for people to know it’s out there. While it is not mainstream yet, eventually it could be.”
Willis doesn’t necessarily disagree with Imes on that point.
She believes the future of MS treatment could see medicines and procedures that better prevent and even repair damage. Stem cell treatment could have a place in that, Willis said, and she’s advising some of her patients to enroll in a new Beat MS clinical trial that employs the same treatment Imes received in Mexico.
“We know it works, so it’s something I hope can enter the mainstream conversation,” Willis said. “We’ve made giant leaps with treating MS over the past 10 years. I’m optimistic the next 10 years will show as much innovation.”
Zack Plair is the managing editor for The Dispatch.
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