Hi, my name is April. 8 days after my 40th b-day I got the results of my skin biopsy. It was positive for Small Fiber Neuropathy. I was told over the phone...so I haven't seen my neurologist yet since the diagnosis.
I'm glad to FINALLY have a diagnosis after many, many years & tests. However, I wasn't expecting it to be this! Until now, I've never heard of this disease.
Since 2007 I've survived a really bad case of Whooping Cough (which landed me in ICU), a Pulmonary Embolism (6 weeks after abdominal surgery) & severe hemorrhaging (5 weeks after a complete hysterectomy). Doctors say I should be dead! I've had several blood transfusions as well as iron infusions.
While doing a CT Scan to check on the damage from the pulmonary embolism, the doctors discovered 3 black spots on my right lung that were growing.(The pulmonary embolism was in my left lung). {and NO, I've never been a smoker}. I had a PET Scan done & it didn't show cancer at that time. I have to have CT's regularly to keep a check on the spots.
Anyway, what I'm getting at is...I know pain & I deal with it fairly well. But I'm scared about this new diagnosis. I don't know what to expect. I don't know if it's been caught in time to help me. I already have symptoms of it affecting my bladder & colon. What does this mean?
My appt. with my neurologist is 9/29 at Vanderbilt Hospital. Until then, I've just been searching the net. I'm really scared from what I've read. Can someone/anyone help me understand what my future holds?