When some patients receive a neuropathy diagnosis, they’re overwhelmed after years of pain and don’t quite know where to begin. Not Judy S.
Judy went to see her family doctor after experiencing occasional pain and numbness in her feet for a few years. After a referral to see a neurologist and extensive testing that included skin biopsy nerve studies, she learned that she had severe small fiber neuropathy.
“What I read about neuropathy scared me to death,” says Judy, whose research revealed that the condition could sometimes lead to amputation or leave patients dependent on a wheelchair.
She also began getting vitamin B12 shots every two weeks from her internist and exercising for an hour each day. Although she had been taking phenytoin for 35 years to treat epilepsy, Judy stopped taking this medication, too, under the careful watch of her doctor.
She worked her way through her neurology appointments without much luck until it came to her last one with Todd Levine, MD, neurologist and medical director of HonorHealth Neurology.
“Judy had painful neuropathy when I first met her,” explains Dr. Levine. “My hope was that correcting her metabolic syndrome could improve her condition.”
She was surprised that her first doctors didn’t know much about the condition. Determined to learn more and identify a treatment that could give her the best possible outcome, Judy began calling other neurologists in hopes of finding one with the expertise to treat her specific condition.
“It took me four to six months to get an appointment with a different neurologist, so I made appointments with eight of them,” she says.
One by one, Judy went to see them in search of answers. She learned that there were three possible causes of her neuropathy: low levels of vitamin B12, long-term phenytoin (an anticonvulsant) use and pre-diabetes. Judy had all three of them, so she decided to act.
“I immediately changed my diet,” she explains. “This was hard because I was addicted to sugar and had bad snacking habits.”
By the time Judy saw Dr. Levine, she had results from her initial bloodwork as well as follow-up tests that showed improvement in her neuropathy over time.
“When I went to see Dr. Levine, he knew I was serious about this,” Judy explains. “It’s hard, because a lot of people I meet with neuropathy are not willing to change their diet or exercise. They just want a pill to make it go away.”
Judy was relieved when Dr. Levine spent an hour with her reviewing her files, discussing her lifestyle changes and answering her many questions.
“He explained a lot to me that I didn’t understand,” she notes. “For example, I didn’t know that when nerves regrow, they hurt.”
This information set her at ease and motivated her to continue to do what she could to manage her condition through diet, exercise and supplements, and with support from dietitian Lisa Gonzalez and exercise physiologist Maira Perez at HonorHealth’s Bob Bové Neuroscience Institute Wellness Clinic. Her hard work and commitment to her health paid dividends because after one year, her symptoms improved and a repeat skin biopsy showed that her nerves had regrown and, in fact, were now normal.
Although she still experiences the occasional flare-up and has some numbness and tingling in her body, Judy has shown significant improvement and has reclaimed her life. She’s so passionate about taking control of her own care that she even wrote a booklet about her experience and helps coach other neuropathy patients as they navigate their own diagnoses.
“I just wish every person with neuropathy could see Dr. Levine,” she insists. “You don’t know how happy I am to be sitting here with a normal life again.”
Dr. Levine was thrilled to see that Judy’s diligence had paid off.
“Her improvement is based on her active involvement in changing and improving her overall wellness,” he notes. “Our bodies are machines, and the better we treat them, the longer they will perform correctly. In most cases, these interventions can have a very big effect on a patient’s health.”