Is this ALL I am?

By Wendy, Small fiber sensory neuropathy, United States, April 11, 2018

I decided to add my experience here after reading Brooke's story. It has been almost fifteen years since the onset of Small Fiber Sensory Neuropathy in late 2004. The disorder is prefaced "Idopathic", in my case. Which essentially means, "we don't know WHY this disorder developed". I was once an overachieving IT-professional, raising a beautiful daughter and considered one of the most innovative specialists in my field. When SFSN took over my life, I was positioned to move into the CIO job at a large manufacturing company, my life was everything I could have wished for. 

The day was sunny and warm, just like most others. I headed out to pick up some lunch, when I put my hands on the steering wheel, I realized I could not feel it. Within weeks, I had not only lost feeling in my hands but in my feet, legs, arms and parts of my neck & face affecting walking, balance and my ability to function independently. Desperate, I underwent surgery allowing a surgeon to remove several bones from my neck. The neurologist believed that a narrowed space had pinched my spinal cord and I would be fine in a month or so. Only three weeks passed before all of my symptoms had returned with what seemed like a vengence. At that point, my doctors began to question the validity of my condition. In the Spring of 2006, through my own research, I found Dr. Anne Louise Oaklander at MGH and her research in the area of neurological pain. I promptly made an appointment and went to Boston. Having endured the Biopsy Skin Punch, the results were borderline, but my symptoms were unmistakable. 

A dozen or so years have passed and almost as many doctors, I underwent IVIG and my medication regime had expanded to sixteen prescriptions I juggle daily along with a number of over-the-counter vitamins, supplements and NSAIDs. Then came the introduction of both stem cell and biologic treatments, I felt FINALLY it was OUR time too! I am angered to report that SFSN has NOT been included in many clinical trials of similar autoimmune disorders and the number of trials that do address SFSN, can be counted on one hand.

The lack of resources has not a limitation to wellness in my case either and like Brooke, I have stated openly to my primary and neurologist that I would GLADLY act as a guinea pig for either medications or procedures which appear to be a viable solution for this condition. I would rather incur negative or positive effects or even death to the perpetual pain SFSN forces its victims to live with. I believe physicians must be able to acknowledge when skewed test results fall outside of their expertise and address SFSN from the position of collective collaboration. This disorder includes a cross-section of neurology, rheumatology and other areas. SFSN should be diagnosed and treated accordingly. Only then, the suffering that existing patients have lived with every single day will be meaningful and only then will no other SFSN patient will ask themselves whether their quantity of life should out weigh their quality of life. 

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.