Mark’s disturbing health problems have been stumping doctors for years. He started having zappy pains in his hands, face and feet, temperature dysregulation, heart rate and dizziness issues. His PCP was quick to blame these symptoms on anxiety, but Mark knew there was something else at work. His gastroenterologist discovered he has enteric neuropathy, a condition in which the functionality of the gut degrades, as well as diminished swallowing capacity. Mark took a manometry test that measures the functioning of his esophagus, and over half of his swallowing attempts failed. Still, his doctors insisted anxiety was the cause.
Through his own research Mark discovered a condition called small fiber neuropathy (SFN). This occurs when the small nerve fibers throughout the body suffer damage, resulting in not only pain but dysfunction of the autonomic nervous system. The best way to test for SFN is to do a punch biopsy, taking a small section of skin to examine under a microscope. Mark insisted this test be done and the results showed severe damage to his small fiber nerves, up to 40% reduction in length. Although this test proved Mark’s condition was serious, figuring out what to do next has been difficult.
In this episode of the Major Pain podcast Mark talks us through his frustrating experiences with small fiber neuropathy. SFN can be caused by a variety of conditions including diabetes and autoimmune disease. Finding the underlying cause is the best way to treat SFN, but in Mark’s case no cause has been found. He says this makes battling his disease extremely complicated, because if you don’t know what you’re battling you can’t fight the correct way. His research into SFN led him to a national expert, Dr. Anne Oaklander, with whom he is now trialing IVIG treatment to see if it helps. His story highlights the importance of self-advocacy, because the longer SFN goes untreated the more damage it can cause.
Mark mentions a helpful website for understanding SFN and other forms of neuropathy, which can be found at https://neuropathycommons.org/
This Saturday January 27th, Jesse will be participating in a rheumatoid arthritis online summit hosted by previous podcast guest Andrea Dunn. Jesse has pre-recorded a video interview that will play at 1:30PM EST. Click here to register for this free event: https://www.rawyldchyld.com/optin-page
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast