- The Foundation For Peripheral Neuropathy - https://www.foundationforpn.org -

Living with Peripheral Neuropathy: Never Give Up – There is Always Hope

My Story About Living with Peripheral Neuropathy
By: Phyllis Bear

I have come to really hate the word “idiopathic.” My first recollection of a problem was  back in 2009 when I had difficulty climbing a hill on a golf course and my friend had to pick me up with the golf cart. I soon noticed, I began to feel disconnected from my feet, but could not describe that feeling to my doctor. Later I found the perfect description on a neuropathy Web site: a loss of sense of position.

My primary care doctor referred me to a local neurologist and the tests began. Pins were used to poke and prod my body and my feet and ankles were virtually numb to the touch of the needles. Each visit to the neurologist showed the progression of the numbness up my legs. It did not take long for the diagnosis of a neuropathy. The next challenge, of course, was to find a cause.

One of the main tests for neuropathy is an EMG or Electromyogram. This test evaluates the ability of electrical conduction of motor and sensory nerves. The first time this test was administered, the neurologist cranked up the strength of the electrical pulse quite dramatically until my hair was standing on end and my eyes could not focus. The stress to my body was tremendous and the test did not provide any answers as to cause of the neuropathy. The numbness continued to rapidly progress up my legs and into the rest of my body and I had to walk with a cane. In fact, the neurologist said he had never seen one progress so rapidly. The final straw was when I went to have my hair cut and could not feel the comb in my hair. The doctor’s prognosis was that I would be in a wheelchair within 6 months. At least 1 more EMG was performed and still no cause was found for the neuropathy and so it was deemed idiopathic.

As a result of our frustration with the idiopathic diagnosis, we asked for a second opinion and were put in touch with the Mayo Clinic in Scottsdale, AZ. We made the trip there in 2010 and were put through their very efficient method of specialist visits over the period of a week. Test after test, including 2 skin punches and another EMG, and they came up with the same diagnosis with just more granularity. Now we knew it was an idiopathic small fiber neuropathy. The only other difference was that the Mayo Clinic neurologist did say that some nerves can and do regenerate, thus giving me some hope.

In addition to trying an electrical stimulus device, I just put my cane down and started walking on my own. The numbness seemed to start dissipating over time and the only residual weakness showed itself in continued difficulty climbing even the slightest incline or steps. If this was my only issue then I thought I could live with that and be happy.

Move the calendar forward and after years dealing with other medical issues and finding meds that work for those issues, I decided I needed to challenge myself and this issue with the leg weakness. I asked some girlfriends to join me and after some training in the gym, we challenged the climb up Pilot Butte in Bend, OR. This is a climb with an elevation change of approximately four hundred feet. We climbed up a very steep and narrow dirt trail, stopping frequently for me to take a very brief rest (perhaps 1-2 minutes each time). It was exhilarating to reach the top after less than thirty minutes and celebrate the accomplishment with good friends.

If I can do this, then I challenge others with neuropathy to try the same. I firmly believe that you should never give up, there is always hope!

FROM THE FOUNDATION:  The Foundation for Peripheral Neuropathy neither endorses nor recommends any specific electrical stimulus device described  in this story.  Patient experiences with different therapies vary widely.  We share Phyllis’ story of determination and hopefulness hoping it will inspire others.

Photo credit to Ann Kieffer