← Return to Now what! Neuropathy in feet and ankles.. Numbness in hands and arms

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@duquer

Every year since I was born, my birthday was a special day for me. As a child, and as I grew to be 60 years old, it was always my special day off!  
However, on my 61st birthday, what started out as my special day, turned into the realization that my 41 year career as a professional health care worker was over and my next career would be as a “professional patient.”  

My doctor diagnosed me (on my birthday) with severe AML leukemia and that there was a bed waiting for me 90 miles away in Boston, Massachusetts.  I was heading toward the most challenging journey of my life. Within a month later, following the first round of chemotherapy, I was found unconscious, coded, suffering severe neurological defects, and I was placed on a ventilator for three days. It would take another two months in a Rehabilitation Center for me to get home with an expiration date of less than six months, which by the way was extended twice!

I finally arrived home, 3 months later in an ambulance and dumped in my bed.  I found myself wearing diapers, a feeding tube inserted in my stomach, taking 16 different medications, and needing 24/7 care.  My arms and legs were totally useless.  To be honest, I knew that I was heading towards the end of the line and I couldn’t wait to get there.  I had visiting nurses, therapists, clinicians, social workers checking up on me and the list went on and on. During the year 2013, I was rushed to the hospital eight times. I was encouraged to go to hospice several times, however, I figured if I was going to check out, I was going to check out in my home!

Fast forward 2 1/2 years later and the doctors, who were sure the leukemia would come back, were all wondering why it didn’t!  

So now it’s ten months since my daughter's wedding video went viral. During that time I continued to be in and out of hospitals and rehab facilities and tried all kinds of different medications with their usual side effects.  I finally got to see the top neurologist in my area in July 2016, and after having all kinds of lab tests, x-rays, and an EMG, I finally got a formal diagnosis called “severe axonal sensorimotor polyneuropathy.”  If you ever have had  Novocaine for dental work, imagine your whole body feeling that way permanently!  She also informed me that “there was no cure, just medication for the numerous symptoms, but I would have to live the rest of my life with it.”  The neuropathy affected my balance, my ability to feel anything, and the whole experience left me with off and on tremors. I was falling at least twice a month.  I needed help entering and leaving a car.  My family purchased a wheelchair adaptable van that could carry my battery powered wheelchair because of the need to use a wheelchair in open spaces.

From that point forward, it was just me and my iPad. Every day while lying in my bed I would search the Internet for all of the information about my neuropathy. I found several clinics throughout the United States that offered life changing stem cell therapy or medications for my condition. I would spend hours each day talking to different clinics, hospitals, doctors offices throughout the country.  I sent countless copies of my medical records out to these places in hopes that someone could help me. I even went to see a doctor whose practice is in a dark windowless basement of a commercial building in New Hampshire, but he only takes cash!  Now that’s not fishy at all!  I tried different drugs, gabapentin, B12, celexa, Nortriptyline, Lyrica and also several over-the-counter neuropathy drugs.  Nothing worked, and the side effects were unbearable. I even tried acupuncture during the summer, the side effect?, I slept through them!

Since I am not able to hold a newspaper, I read the local paper on my iPad, and one day in January, 2021, I spotted a small ad from a brand new business in WIndham, Maine called Nulife Wellness, that appeared to be a letter written just for me and my condition. I hurriedly called the phone number and made an appointment with Sara Doyon, a family nurse practitioner, and received a half hour treatment from a machine that looked like a big TENS unit, but it is much more than that! A TENS machine is like a X-ray and RST SANEXAS neoGEN device is like getting a MRI. More powerful frequencies and over 20 different treatment programs designed for acute and chronic painful conditions.

It had lots of electrodes that sent electrical impulses through the skin with the goal of regrowing nerves.  It was not at all painful, just a soothing electrical massage to my legs, however the cold and snow of winter delayed my continuation of treatments.

I restarted treatments by going twice a week through March and April.  During that time I experienced no results.  I was desperate and began to think that nothing could help me, and that it was time to permanently discontinue them. On the last Thursday of April, I went home thinking that this would be my last treatment.

I had made my decision that when I awoke the following morning I would call and cancel further treatments.  That night while asleep following a day treatment I was awakened by the extreme discomfort and heaviness of both my legs. My legs felt like I had run a 26 mile marathon. It was then that I realized why they felt that way.  I was experiencing nerve regrowth!  The treatment finally woke up my legs!  I was actually feeling pain for the first time in 8 years!  As much as they hurt real bad, I knew why! It was at that point that I realized I was on to something. In the morning I called Sara and told her the good news, and I continued my treatments with her right through the month of June.  

Due to the fact that I was showing signs of improvement, Sara called the company that manufactures the machine to let them know how well I was progressing.  The name of the company is RST-SENAXAS which is located in Las Vegas. In July, I decided to make a few appointments for further treatments with them during the middle of August. Since then, there have been several more improvements in my regaining mobility.  As I write this, it’s been SIX months since my last fall!

I have suffered with polyneuropathy for 9 years and (I've been) trying to be more independent.  I want to make it real clear that this machine is by far the best treatment I have undertaken that reduces the symptoms of absolute stiffness and increases sensations in my limbs.  It is not yet a cure, but a real treatment!  We have to keep in mind though, nerve regrowth is a process that does not occur overnight, it takes time! With me it took over 15 treatments over a 4 month period before experiencing the positive result.

It would be in your best interest to talk about this possible treatment with your primary care physician to see whether you might be a good candidate. The first video was taken on Oct 2015, The second video was taken this summer



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Replies to "Every year since I was born, my birthday was a special day for me. As a..."

Thank you. Your story is very helpful to me.