AANEM Foundation News Express

AANEM Foundation News Express

Connection is Key: Michael’s Support for Peripheral Neuropathy

9/16/2021
 
Michael Wright of Charlotte, North Carolina enjoys swimming, painting rocks, gardening, binge watching TV shows, trying new restaurants, and being with family. His other hobby, however, takes up a bit more time. Through a partnership with The Foundation for Peripheral Neuropathy, Michael supports and advocates for others like him—those living with peripheral neuropathy. With a Facebook support group called Peripheral Neuropathy Success Stories, he connects thousands of patients.

Michael was in his mid-fifties when he started having “annoying pain” in his feet. Michael explains, “My calf muscles began to twitch, and I had no idea what was happening to me. I just knew something was very wrong. Because of the daily pain, I was frustrated and started feeling depressed. I had always been a go-getter with no tendencies of depression before.”

Michael recalls seeing an internist right away. “When I described my pain,” Michael expresses, “he wanted to treat the depression; he wanted to blame all of my pain on depression. I knew that was not the cause. He did a very fast neurological exam and said I was fine. His reaction to my symptoms caused frustration. I had always been in control, and my symptoms were causing me to become unraveled.”

When repeated visits to the internist were not productive, Michael changed doctors. The new doctor, an osteopathic doctor, referred him to a neurologist. The waitlist was long, but once Michael finally saw the local neurologist, she took his full history and scheduled an EMG and a nerve conduction study. Michael says, “Those tests revealed peripheral neuropathy. I had suffered about 6-8 months before I was diagnosed. My neurologist couldn’t find a reason for my nerve damage, but suggested that spine issues could have contributed.” But visits to foot and ankle orthopedic doctors and spine specialists did not turn up any reasons for the neuropathy. He did not have significant spine issues, and did not have tarsal tunnel syndrome or Charcot-Marie-Tooth Disease, said the specialists.

“When I received my diagnosis, I was relieved to have answers,” Michael explains. “It was affirming to show important people in my life that my multiple painful symptoms were a result of nerve damage. I felt determined to learn all I could about this disease. I wanted to connect with others who were going through a similar situation.”

Further testing did not reveal a cause for the neuropathy so Michael was ultimately diagnosed with idiopathic sensorimotor polyneuropathy. Over his care journey, Michael was seen by two neurologists, two rheumatologists, two foot and ankle orthopedic specialists, a physiatrist, two spine specialists, a neurosurgeon, and two pain doctors. He also tried a chiropractor, but found no relief from spinal adjustments.

Peripheral neuropathy is dysfunction of the nerves outside of the brain and spinal cord which can arise from a wide variety of causes. People with peripheral neuropathy can suffer from one or all of the common symptoms, which include numbness and tingling of the feet and sometimes the hands, pain from mild stimulation to affected areas, pain that is characteristically burning or electrical and shooting, reduced sensitivity to temperature or pain, balance or walking problems, and weakness or atrophy of affected muscles.
When Michael was looking for support, he found that most groups allowed people to “post anything.” To him, it seemed many were choosing to post about despair. “Some people need that,” Michael admits, “But because this made me feel less encouraged, I decided to start my own positive support group.” Michael’s job in sales management involved a lot of air travel and hotels and, thankfully, he was able to retire early. “Having time to build up the support group has been perhaps the biggest blessing. It has allowed me to connect to so many positive people and organizations.”

Through his volunteer efforts with The Foundation for Peripheral Neuropathy and the support group, Michael started to cultivate a lot of new relationships. His group has partnered with Harvard and MIT regarding a new potential device to treat neuropathic pain. He has also served on an advisory board for a pharmaceutical company that offers a treatment for painful diabetic neuropathy. Members of the support group created a three-minute video available online highlighting what individuals “want you to know about peripheral neuropathy.”

Michael continues, “My group, Peripheral Neuropathy Success Stories, offers educational Zoom calls every two weeks between September and June. I have met many experts, including the CEO of a drug company with a product currently going through clinical studies, therapists, hypnotists, life coaches, nutritionists, a physician who uses a lot of novel approaches for treating neuropathy, and many others. This has been a silver lining.” To date, the group has approximately 15,000 members, representing over 100 countries.

For treatment of his painful symptoms, Michael was initially prescribed Lyrica (pregabalin) and a baclofen muscle relaxer. Lyrica caused side effects he couldn’t tolerate, so he then switched to gabapentin. His pain doctor prescribed Belbuca (buprenorphine), a long acting, class III opioid. He also started taking many supplements. The combination slowly began to help. “I started walking three or four miles at a time,” Michael says. “I started going to the grocery store again. I was beginning to see some light again and I was feeling a bit more encouraged.”

For others going through a similar situation, Michael’s advice is to “try everything” because he believes there is a lot of trial and error involved in finding the right treatment combination. Since his diagnosis, Michael has tried acupuncture, hypnosis, medical massage, cannabis, CBD oil, red light laser therapy, swimming, injections into his spine and feet at the pain doctor’s office, and a spinal cord stimulator implant. Of all those things, Michael believes that swimming has helped the most. “Being in the water makes my legs and feet feel better and swimming laps feels like good exercise. The spinal cord stimulator has helped relieve the twitching in my calf muscles and has relieved some of my pain.”

In addition to trying different ways to ease symptoms, Michael also encourages others to reach out for support and stay distracted. Michael explains, “Being around other people helps me stay distracted. Doing my hobbies makes me distracted. Do whatever you enjoy doing and get your mind off your neuropathy symptoms. The more you give into your symptoms, the more they will take control of your life. Do not allow that to happen. Take one day at a time. One moment at a time.”

It has been difficult for Michael to accept that there are “no magic bullets” for treating nerve damage, though up to 40 million people suffer from peripheral neuropathy in the US. “In my opinion, a lot of neurologists seem more engaged by patients with other neurological conditions. Yes, Parkinson’s disease and ALS reduce longevity and certainly deserve a lot of attention and passion from specialists, but neuropathy steals quality, not longevity. And it’s stealing quality of life from millions of people. We need solutions urgently.”

For Michael, he has come to accept that pain and neuropathy symptoms are not easy to deal with, yet it is possible to still have a productive and meaningful life. Michael finishes by adding, “I have learned to live in the present moment. I am not sure I had ever been good at that prior to developing neuropathy. There is definitely something to be said for living in the present moment.”

For more detail, connect with the Peripheral Neuropathy Success Stories Facebook support group or The Foundation for Peripheral Neuropathy. To support future education and research of neuropathy and other disorders, consider donating to AANEM’s American Neuromuscular Foundation, where every dollar raised directly funds research.


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