When Melanie Gezel-Rangel went to Mexico last summer to undergo multiple sclerosis treatment, she didn’t know whether the associated costs and health risks would be worth the attempt to halt the progression of her degenerative disease.
Ten months after returning home to Shakopee, Gezel-Rangel noticed changes ranging from small things, like feeling less fatigued after a hot shower, to major improvements like regaining eyesight she lost due to MS 20 years ago.
“My vision went from 20/200, which is legally blind, to 20/60 in my right eye,” Gezel-Rangel said. She confirmed the good news with her opthamologist. “Since it didn’t happen right away after the treatment, I thought it wasn’t going to happen.”
Her vision has since improved even more, to 20/40.
Gezel-Rangel has lived for nearly 30 years with multiple sclerosis, a degenerative central nervous system disease that has affected everything from her sense of touch to whether she can control her foot muscles to walk more than a mile. MS causes a person’s immune system to attack the protective sheath that covers nerve fibers in the body. This causes communication problems between the brain and the rest of the body. MS can cause a person’s nerves to become permanently damaged over time, which is what happened to Gezel-Rangel.
The hematopoietic stem cell transplant Gezel-Rangel underwent in Mexico is used in the United States for certain cancers, but it’s still in clinical trials for approval to treat MS. The goal of HSCT was to wipe out Gezel-Rangel’s immune system, which is constantly attacking her nerves, and replace it with a “baby immune system” to halt, or at least slow, the progression of her MS.
After so many years of living with MS, Gezel-Rangel’s symptoms were progressing so quickly she wasn’t even nervous about the treatment and potential complications. She just wanted to stop her body from attacking itself.
The HSCT treatment consisted of four days of chemotherapy, with Gezel-Rangel’s stem cells harvested after the second day. Once the chemotherapy was complete, doctors infused her with her own harvested cells to jump-start her new immune system.
The recovery was painful — more painful than Gezel-Rangel expected, despite months of talking with other HSCT patients.
“What they call this is the recovery roller coaster,” she said.
Doctors warn HSCT patients their MS symptoms could get worse in the initial recovery stages, but as patients approach the one-year anniversary of their treatment, things typically improve.
“I knew things could get worse, but the little graphic didn’t explain to me how painful life was going to be,” she said.
One of her main and most frustrating symptoms is spasticity, or constant muscle contractions, in her limbs. When she got home from Mexico, those symptoms got much worse, and she worried they wouldn’t go away. Thankfully, with physical therapy, massages and Botox treatments, Gezel-Rangel is now seeing improvements in the spasticity, but she wants people considering HSCT to know that not everything is rainbows and butterflies during recovery.
“What I say on the (online) forums is to expect the worst and be pleasantly surprised if it’s not as bad as you think,” she said.
After all, HSCT is not considered a cure for MS. It’s meant to halt the progression of the disease since MS can cause permanent nerve damage and disability, and HSCT doesn’t work for all patients. Gezel-Rangel was told by her doctor that up to 30 percent of patients don’t see any halt in MS progression after treatment, let alone symptom improvements. She considers herself fortunate that the treatment appears to have worked.
“You have to know the main goal of HSCT is to stop the progression of your MS. If you get any improvements that’s a bonus, but you shouldn’t expect improvements,” she said. “I’m trying to make sure people are being realistic about what to expect from this.”
Not only has Gezel-Rangel benefited from HSCT in terms of overall mobility and energy and fewer symptoms, she has reclaimed lost time she used to spend getting infusions at the hospital as part of her previous MS treatment.
“I used to do one day a month in the hospital (for an infusion), and it would make me feel like I had the flu for two or three days after that every time, so I’d lose three to four days of my life every month,” she said. “Just having those days back every month is enough for me, really.”
On top of how she feels physically, Gezel-Rangel has tangible proof the HSCT has worked — at least for now — in her MRI results. Comparing an MRI of her brain from now to one taken before treatment in 2018, doctors found no new or active lesions.
“The fact my MRI is unchanged since the last one a year ago, you can draw the conclusion that HSCT successfully halted the progression of my MS for the time being,” she said.
Through everything, including the month she spent in Mexico for treatment, her husband has been there to support her and pick up extra jobs for the six months she was off from her part-time job with Shakopee Community Education.
“He’s been amazing the past year for me. He went to Mexico with me, and it was really hard for him to see me when I was sick during chemo,” Gezel-Rangel said. “Since being home he’s worked full time, drives limo on weekends and even irons someone’s shirts for income since I wasn’t working.”
Rangel also takes care of most of the household chores so Gezel-Rangel can save her energy to work a few hours a week and do physical therapy.
“You can’t just sit and wait for changes to happen, you have to work on improvements also,” she said. “We bought an elliptical so I can build my muscle strength.”
Though the improvements are sometimes minor, Gezel-Rangel said most days she feels the treatment was worth everything she went through to get here. There is nothing certain about her prognosis, but she’s content knowing her MS isn’t causing her body any more damage for now.
“I don’t know yet if in the long-term it stopped my progression, but I do know I’ve been off meds for a year and I haven’t had any new symptoms… when I was progressing on meds before that,” she said. “I’m just happy with what has happened so far that I don’t really need any more than that at this point.”