Diana’s Story: Multiple Sclerosis and Stem Cell TreatmentIt began with a birth, 20 years ago. After the arrival of her daughter, Diana Naklicki Myers noticed a rough patch of skin on her left knee. When she also began to experience migraines and fatigue, Diana went to a specialist, and Diana’s journey began.
She started out by bringing up her mother’s Multiple Sclerosis, and the possibility that her symptoms were evidence of the condition in herself. Doctors told her that she should be relieved – that “MS is not hereditary.” Diana continued to struggle with her symptoms, but welcomed the arrival of her second daughter.
A Medical Mystery
After her second daughter was born, Diana woke up one morning, unable to use her right side. With her husband at work, and her mother unable to get her downstairs, emergency responders were called to assist. Again, Diana brought up MS, and again, she was told not worry: “MS is not hereditary.” Diagnosed with a pinched nerve, it actually took Diana six months of physical therapy to learn to write and walk again.
At a follow-up doctor’s appointment, Diana mentioned the fatigue, and the trouble she was having. Again, she was dismissed by the doctor.
Determined to live a healthy life and provide the same for her family, Diana studied holistic medicine. Her children enjoyed whole, natural foods, probiotics—and not much from McDonald’s. With extra care, Diana made sure she did everything right in order for her family to eat well, and live as free of toxins as possible.
With her training, Diana began to speak to healthcare providers and others. While speaking at a conference in Utah, Diana became frustrated with what she called brain fog—difficulty she had using the words she wanted, and even writing her name.
Returning home to Florida, Diana again sought medical help from a different doctor. When she asked about MS, this new doctor finally acknowledged the medical facts: heredity can be a factor in MS and other autoimmune diseases. The doctor immediately ordered a neurological consult.
Diagnostic scans led to the scheduling of a spinal tap that same week. Several days before the spinal tap, Diana lost the use of her right leg. Told to wait until her scheduled appointment, Diana finally had the spinal tap, and her first steroid treatment, at her scheduled appointment.
As fate would have it, the site of the spinal tap was the location of a MS lesion on Diana’s spine. When the tap failed to close, doctors performed a blood patch, a procedure whereby Diana’s blood cells were used to form a patch at the site of the tap. Initially able to sit upright, Diana’s condition deteriorated over the weekend, again losing control of her right side, and her ability to lift her head.
By Sunday, Diana was curled in a fetal position, vomiting uncontrollably. When contacted, the neurologist told her to meet him at the hospital the following day. When she arrived at the hospital, the attending nurses were astounded to hear Diana was told not to return to the hospital immediately!
Diana’s condition, coupled with the care she had not received for days, landed her in the hospital for a ten-day stay. Her diagnosis, one of the fastest for that condition given by that hospital, was finally clear: multiple sclerosis.
Talking to Diana gives no clue to the medical nightmare she has endured. Upbeat, knowledgeable, and forthright, she describes herself as a “glass half full.” More than the sensibility gained by someone familiar with MS, Diana took her illness in stride, decorating her cane with rhinestones. Says Diana, “If I am going to need a cane, I am going to be cool.”
From diagnosis forward, Diana diligently underwent chemical and prescription therapy to keep her symptoms in check. Her initial steroid treatments of Solu-Medrol exposed her to more steroids than a bodybuilder would take in a year—and Diana had treatments every three months.
Diana was dismayed by the false hope offered by steroid treatment. Reducing the inflammation, the steroids gave Diana energy that lapsed with each treatment, even as her symptoms progressed. Diana was placed on a waiting list for a well-regarded neurologist in her area.
With two children, four hospital stays per year, and increasing motor difficulty, Diana remembers thinking “I’m good with this, but there has to be an answer.” She was referred to a research clinic in Miami.
Working with patients with movement disorders like Parkinson’s, MS, and Lou Gehrig’s disease, a specialist Diana saw noted she did not often see patients decline as rapidly as Diana. Her scans revealed numerous lesions on her brain. Diana remembered her brain looked like “Swiss cheese.”
In January of the following year, Diana was able to see the neurologist she sought, when his patient list opened up. Started on Avonex, an interferon drug, Diana could get four days of real living out of each week.
Along with the drug, Diana was heartened by the quality of care and advice she received from the new neurologist. Having been treated inconsistently in the past, Diana felt her new doctor was a “breath of fresh air.” She managed well on the drug for two years, with no further attacks.
After two years on the drug, Diana described the heartbreak of learning her insurance company would no longer cover Avonex, but would instead only pay for the drug Extavia. Within a month, Diana was back in the hospital.
Now under the care of a neurologist, and a cardiologist due to the stress on her heart, Diana was placed on monthly intravenous infusion of Tysabri, a potent treatment with significant side effects.
Arriving at the hospital each month, Diana sat with the circle of patients receiving infusion therapy. Many were cancer patients. Diana realized the true horror of fatal illness as she noticed that each month old friends were gone, and new patients appeared. Diana later discovered her neurologist received a $1,000 bonus from the drug company for every monthly Tysabri treatment she received.
After a year of the infusion therapy, Diana’s neurologist failed to order bloodwork in order to continue the therapy. Informed in March, that he had no appointments available, Diana got on a waiting list to see her neurologist for the bloodwork in July, and watched as her infusion therapy lapsed.
While traveling see her daughter’s regional volleyball tournament, Diana noticed a dramatic increase in pain. She feared that she had developed a rare disease associated with use of Tysabri -- trigeminal neuralgia -- an excruciating chronic pain disorder, which could left Diana in an agonizing bouts of searing pain—even when just brushing her teeth.
Back in the hospital, dazed, drugged, and ridden with pain, Diana discovered the original neurologist who had treated her years earlier in haphazard fashion, was now covering rounds with her current neurologist.
With no coordination of her medication or treatment, or a follow-up appointment less than two months away, Diana’s current neurologist discharged her, and told the nurse: “She has MS, doesn’t she know there is nothing we can do??” Still in intense pain, with no forward course of treatment, Diana was sent home.
Back Home and On Her Own
Deeply discouraged by her medical care, Diana, like many chronic autoimmune disease patients, actively became her own health advocate, exploring options. Pouring through research, Diana found reference to Low-Dose Naltrexone (LDN) treatment as an option for MS.
Pushing further, Diana found research references to Dr. David Borenstein, at the New York Stem Cell Treatment Center. During a telephone consult, Dr. Borenstein and Diana discussed the effects of the drugs she was currently taking. Working with Dr. Borenstein, Diana was weaned off all her medications except for a prescription of LDN.
Within one week, Diana experienced significant improvement, was able to go from her walker back to a cane, and was released by her physical therapist with exercises to do at home. After these improvements, Diana and Dr. Borenstein discussed the potential of investigational autologous stem cell therapy offered through Dr. Borenstein, and wanted to give it a try.
Diana’s Stem Cell Treatment Experience
Through fundraising efforts with family and friends, Diana was able to undergo autologous stem cell treatment with Dr. Borenstein at the New York Stem Cell Treatment Center in May or 2015. Because stem cell treatment is not approved by the U.S. Food and Drug Administration (FDA) as a cure or treatment for MS, or other conditions, it is considered an investigational procedure, and research is ongoing in many areas.
On arriving at Dr. Borenstein’s Manhattan office, Diana received a thorough assessment, and a detailed explanation of the treatment from Dr. Borenstein. The next day, Diana and her husband returned to the office for the actual procedure.
Diana describes the procedure as pretty simple. Dr. Borenstein performed a mini-liposuction procedure on the skin just around her waist. During that time, Dr. Borenstein harvested Diana’s own adipose, or fat, cells. While the procedure caused slight bruising, according to Diana, it involved little discomfort.
Processed for approximately 90 minutes, Diana’s own stem cells were then reintroduced into her body. Altogether, Diana said the procedure took about three to four hours. She and her husband were on their way out, and headed off to enjoy dinner with family in New York City.
During the drive to dinner, Diana was surprised to notice immediate changes that she had not expected. Her vision, which had been deteriorating over the past 15 years, began to change. Diana describes it as like “a tunnel just opened up.” Not only did she notice a sharply widened range of vision, Diana began to experience vibrant colors as the couple drove to her mother-in-law’s house.
Though excited, Diana wondered if brushing her teeth that evening would be as painful as always. Happily for Diana—her neuralgia was not triggered again that night, and that debilitating symptom disappeared after treatment.
Now, in July of 2015, Diana is two months post her stem cell process. In the thick of home improvement projects she had been unable to complete for years, Diana recently mowed her lawn for the first time in over a decade.
Finally finding the care and concern she had sought in a healthcare specialist, Diana describes Dr. Borenstein as “amazing beyond limits.” Diana and Dr. Borenstein stay in touch on a weekly basis, with phone calls or texts.
According to Diana, Dr. Borenstein cautions Diana not to overdo it, despite her newfound energy and improved symptoms, because it’s still easy for Diana to get overtired if she pushes to the limit. But in the meantime, Diana has naturally shed 25 pounds because she is able to “do things now.” The walker and rhinestone-decorated cane are in the attic, where Diana hopes they stay for a long time.
Into the Future
Realizing she may need the same procedure again in six months, or six years, Diana has remarked that while stem cell therapy may not cure you, “it is going to give you a better quality of life. It definitely gave me the expectation of life back!”
Grateful to her family and her faith, Diana places her husband first for the unfailing help and support he has given her. After family, Diana credits Dr. Borenstein, because “he is willing to look outside the box to make you feel better, not make you go away.”
As Diana says, in her life, she did everything right. She ate the right foods, took care of herself—and she still got MS. Although she realizes she may not have the life of a perfectly healthy 40-year old woman, she is grateful for some security that, “from here to there, I can do it!”
Diana says “I’m not going to be afraid of living my life; I want to go do these things. I won’t have a chance if I don’t do it now. Give children a chance to see, hey, this is how we do this, this is courage to keep going.”
A path that began with a birth now continues with new hope. In talking about her journey, and Dr. Borenstein, Diana said, “support is the most important thing.” When talking to others on the journey, Diana says, “I got through it, you can too.”
For More Information
To learn more about autologous stem cell treatments, visit David Borenstein’s New York Stem Cell Treatment Center website.
* These procedures are not yet FDA-approved, and patients who participate in autologous stem cell treatments are part of a patient-funded investigational study.