Today's post from neuropathy.org (see link below) is a personal story illustrating the importance of having patience when faced with the strange twists and turns of neuropathy. It can take a very long time before doctors and specialists a) identify your symptoms as being of neuropathic origin and b) take you through a number of steps in treating it. It's important not to panic but at the same time it can be a very frustrating process. Learning to take each day and each step as it comes, is pretty much forced upon you but it will help if you can try to go with the flow, rather than fighting it.
By Mike Smith
As a professional writer, I spend much of my day at work and at home typing away on my computer. Working within a deadline-oriented industry as well as on a number of personal creative projects, I find myself typing vigorously -- often for hours at a time and with few breaks in between. So, in 2011, when I developed tingling and numbness in my wrists and hands, I -- like most people with neuropathy --initially ignored these slightly bothersome symptoms.
Could I Have Carpal Tunnel Syndrome?
Over time, the numbness and tingling sensations were progressing slowly, lasting for days and then for weeks. It wasn’t painful per se, but it certainly was distracting: I found I needed to take breaks from my writing to give my fingers and wrists a rest. The tingling (for lack of a better word) was continuous -- all the time, day and night.
Fearing I might have carpal tunnel syndrome, I decided to visit an orthopedic surgeon. He was certainly helpful -- and agreed that the tingling in my wrists could signify a classic case of carpal tunnel syndrome, given the amount of time I spend on a computer.
The orthopedic surgeon gave me a cortisone shot and we hoped for the best. Unfortunately, the shot was no help. In my mind though, it had to be carpal tunnel syndrome -- I mean, what else could it possibly be? So for six months, I used wrist splints every day at work and even while I slept to see if the symptoms would subside. But unfortunately, they didn’t…
Getting A Neurology Consult
After six months of waiting and watching, I went back to my orthopedic surgeon in the spring of 2012. By then, the numbness and tingling that I initially felt in my wrists had spread to both my feet and ankles.
The orthopedic surgeon referred me to a neurologist, believing that the spreading of the symptoms might represent something beyond carpal tunnel syndrome.
The neurologist definitely appeared concerned, as I was, otherwise, a healthy and active 25-year-old. I went through a series of tests and exams, ranging from MRIs of my spine and brain, to blood tests, and nerve-conduction studies. My doctors were searching for signs of anything from multiple sclerosis to Lyme disease, and celiac disease. Unfortunately, none of these tests helped us determine the root cause of my symptoms, nor did they pick up any nerve damage.
Given the sequence of events surrounding just one test (schedule an appointment, wait, have the test, wait, make a follow-up appointment, wait, go over results, etc.), by the time I had my second MRI, the symptoms had spread even further. What was a constant tingling in my wrists and feet now spread up to my knees and elbows. I also began to notice that there were particular instances when the tingling was most severe. When I took a hot shower, I had to avoid the water hitting me for too long since it aggravated my symptoms. When I stood barefoot on hard surfaces, I would need to sit down after a while to provide (minimal) relief to what felt like standing on hot bricks. It was also beginning to affect my sleep. Trying to sleep every night is a challenge given the constant tingling in an otherwise dark and quiet environment.
Finding The Neuropathy Association
Each time I was referred to a different specialist, or to undergo another test, I’d eagerly await the results, hoping that we would find something … an answer that explains what I have been experiencing for two years. The stories I read about on the Internet have saturated me with a series of worst-case-scenarios. But it was also while searching for answers online that I stumbled upon The Neuropathy Association’s website. The website provided a plethora of resources – online Chat transcripts, updates on medical studies and research, disease-specific information (considering there are over 100 causes of neuropathy), access to health experts... But what most interested me was learning that there were local patient-led neuropathy support group across the country for people living with neuropathy.
I reached out to the leader of the Pittsburgh support group and attended my first neuropathy support group meeting in the summer of 2013. I met over a dozen people, all with a variety of neuropathies, symptoms, and experiences. While everyone I spoke with at the meeting had a unique story, I was amazed by how each of these people continued to overcome their battles in different ways: they shared the common bond of living with neuropathy and wanting to improve their quality of life.
One of the people I met at the support group meeting took several years to discover the cause of her neuropathy and to get a diagnosis. I was able to relate because I am still working on getting my diagnosis. Connecting with her was especially helpful because I learned -- despite the frustration -- that seeking a diagnosis was a process and I would have to work towards it.
Being Able to Relate and Determine A Plan of Action
I know what I am experiencing, and I know it is 24/7/365 … for almost two years now. Why can’t we find out what’s going on? Why does test after test come back inconclusive? Are my doctors doubting my symptoms – or worse, do they think I’m making them up? It is frustrating to have to explain what I am struggling with over and over again. I learned recently through The Neuropathy Association that 30% of people diagnosed with neuropathy have “idiopathic” neuropathy – in other words, the underlying cause is not known. I’m fine with that…I could deal with that. But in order for me to move forward, the tests need to show my doctors what I’ve known all along: that something is wrong, and it’s spreading, and intensifying...
And, so my quest continues with the help of the Association and with the support of my family and my friends. I will continue to pursue all possible avenues to obtain my diagnosis, seek treatments to get well, and offer support to others too. Though I’m sure this means more doctors, more tests, more questions, and more waiting, I’m confident that the time will soon come when I can check off my battle with uncertainty and begin the process of living well with neuropathy, and not some unknown illness.
Amidst everything that’s going on in my life, I am determined to help increase public awareness of neuropathy. I’ve shared my experiences with a few of my family members and friends, and their first question is always “What’s neuropathy?” This needs to change.
I’m Running in the 2014 Pittsburgh Half Marathon for the Neuropathy Community
It’s crazy that a disease that affects over 20 million people in the US alone (whether they realize it or not) is not on the public radar. So I asked myself “what could I do to make a difference?”
I like to run. Running is therapeutic for me: it’s a mental sport, forcing your mind to focus on every aspect of your body movement: breathing, running, pacing, etc. Despite the fact that my neuropathic symptoms are still present, I can concentrate on other parts of my body to lessen their impact.
I frequently run 5Ks and other races with my wife and friends. Earlier this year, I participated in the 2013 Pittsburgh Half Marathon to help raise awareness and much-needed funds for the Animal Rescue League Shelter; Wildlife Center, a local animal shelter where I rescued my cat from in 2010. And, I recently signed up for the 2014 Pittsburgh Half Marathon – this time I’ll be running to support my fight -- our collective fight -- against neuropathy. And I’ll be wearing my “Together, We Can Beat Neuropathy!” t-shirt, awareness bracelets, and ribbons, and I will have my friends, family, and fellow neuropathy patients joining me as well. It is a great way to raise awareness of neuropathy among tens of thousands of runners, walkers, and volunteers involved in the event … as well as thousands of viewers across the U.S.
It is so important that we, as a community, continue to bring awareness -- in our own way and within our own networks -- to the neuropathy epidemic. Running is the best way I know how to achieve this goal.
http://www.neuropathy.org/site/News2?page=NewsArticle;id=8565
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