u/SkylaBSN-RN

So I guess I’m writing here to see what people think who have been diagnosed with SFN with dysautonomia, and had a skin biopsy to confirm SFN, as the cause for their dysautonomia symptoms. I’m still waiting on results and I’m stressed thinking this is just going to lead to another negative test, and a continued long journey with lots of medical debt and no conclusion on why I have all the symptoms that I do.

I am 26 years old (female) and I have been having daily symptoms for at least 10 years with other symptoms like extreme foot pain and bladder urgency being a problem since childhood. I had a skin biopsy done last week by a neurologist at the Tufts Medical Center in Boston. He was kind of my last hope as I’ve seen multiple specialists over the last 10 years, including testing done at the Beth Israel Center in Boston, where they did a tilt table test that showed I did not have POTS. I’ve been cardiac cleared. And my neurologist in Maine, seems to be stumped as I’ve had numerous of labs and imaging done with no clear result or indication of what’s going on. The only thing we know for sure. Is that I suffer with dysautonomia symptoms daily.

However, my journey trying to figure out what is wrong with me has been long and have led to dead ends. Every day I suffer with a number of symptoms that at first we felt was cardiac related like heart palpitations, SOB when going up any incline, especially stairs, my heart rate spikes with position change and activity. Exercise is difficult for me because of the heart rate spikes and dizziness that accompanies it. But then I was cardiac cleared, and even gaslit that my “symptoms were normal or involved anxiety”. I have a slew of other symptoms, like chronic fatigue, not feeling like I’m fully resting at night, dizziness, lightheadedness, chest pain, pre-syncope, and occasional syncope episodes. Bladder issues like urgency, sometimes leaking if I don’t make it in time, headaches, neck and shoulder pain, blurred vision, standing intolerance due to intense foot pain, that can sometimes feel sharp or numb feeling that will travel up my calf’s. Ultimately, this symptom is what led the most recent neurologist at TUFTS to do a skin biopsy to “confirm SFN diagnosis”. I shared with him that my foot pain is my most longstanding symptom since childhood, that every time I first step on my feet in the morning, it is painfully sharp, standing for any length of time is uncomfortable, I find myself rotating the amount of pressure I put on each foot to give relief to the painful pressure on the bottoms of my feet. By the end of the day, my feet hurt so bad I can’t even stand to walk on them anymore. When I lay down at night my feet and legs feel like they are throbbing. He feels confident that it could be longstanding SFN. Does anyone else have a similar experience? If it doesn’t show SFN, what could possibly be the reason for all this?