How the hospital did not listen to me
About a year ago now I started to feel weird in my hands, started with 3 fingers then it spread to my hand, I thought it was nothing so I ignored it. Then it started to worry me so I told my mother, we went to the hospital and they took blood, took scans, and sent me home saying it was nothing. Fast forward a few days, I lose feeling in both arms and now I can’t feel my legs. We go BACK to the hospital the next week and they take more blood, went over more labs and scans, well now the hospital doesn’t know what to do, and neither do we, at this point people are starting to think that I’m playing around for attention even though I wasn’t. About a week after I lost all feeling, I went to get out of bed that morning and fell to the ground, I could not stand, I could not walk, I couldn’t lift my arms, I was basically paralyzed. It scared me, and my mother, we talked to doctors and they all said I could die and I needed to get to women’s and children’s hospital ASAP, they all believe if it went to my chest I would be dead. Now at this point I’m 17, scared, being told i need help, I had 4 DOCTORS and a SHRINK come and talk to me. They thought i was thinking and faking this whole thing. I was getting mad and upset, they took a scan of my spine and head AGAIN, took blood AGAIN, just to be told that I was fine and there isn’t anything I can do. I went home with no answers, and upset. Later I go to my neuro doctor and she took blood, and at this point I’ve given up, I started to question myself and if I’m thinking it but when the labs came back she told me she knows what’s wrong, I have SFN( small fiber neuropathy) and it’s a easy fix, all I have to do is a IV every week and I’ll be okay! So I started it and I’ve been able to feel just fine, I do have bad days but it’s not bad and I’m almost done with the treatment!! It was a long process but I did it and still passed my junior year!!
#medicallydiagnosed #diagnosis #hospital #lemon8contest #lemon8comments
Experiencing unexplained symptoms like numbness or tingling in the hands and feet can be frightening, especially when medical professionals are unable to provide clear answers. Small Fiber Neuropathy (SFN), the diagnosis described in this story, is a condition that affects the small sensory fibers in the peripheral nervous system, leading to pain, numbness, and weakness. Unfortunately, SFN is often under-recognized because its symptoms can mimic other disorders, and standard tests may initially come back normal. If you or someone you know is going through similar unexplained symptoms, it's important to know that persistence in seeking medical advice can make a significant difference. Neurologists who specialize in neuropathies often use specialized tests, such as skin biopsies, nerve conduction studies, or autonomic testing to confirm SFN. Treatment for SFN may include managing the underlying cause if one is identified, such as diabetes or autoimmune diseases. In many cases, therapies like intravenous immunoglobulin (IVIG) have been shown to help reduce symptoms and improve quality of life. Regular follow-ups and working with a multidisciplinary healthcare team can help tailor treatment plans effectively. This story highlights a critical challenge in healthcare — patients not being heard or believed when symptoms are invisible but very real. Advocating for oneself, bringing a trusted family member or friend to appointments, and seeking second or third opinions can be key strategies. Mental health support is equally important during this stressful journey as feelings of frustration or self-doubt are natural but manageable with professional help. Finally, maintaining lifestyle factors such as a balanced diet, gentle exercise, and stress management can support overall nerve health and wellbeing. Connecting with patient support groups for SFN can also provide both emotional support and valuable information. Remember, early recognition and appropriate care can dramatically improve outcomes for those experiencing conditions like Small Fiber Neuropathy.
