Young adult with idiopathic sensory axonal neuropathy
Hello all, first time poster here. I'm hoping by reaching out and telling my story I might connect with others who may be going through the same or similar experiences.
In 2015 at age 33 I was diagnosed with idiopathic sensory axonal neuropathy.
My first obvious and bothersome symptoms began in Jan 2014. I noticed numbness in one toe, the soles of my feet were burning when walking about, I had mild coordination loss in my right foot, and aching pain in my right calf. When these symptoms didn't go away after a day or two I began worrying. And when they didn't go away after a couple weeks I began panicking. The worst thoughts ran through my head.
The year preceding all this, 2013, I was in the best shape of my life. Athletic. Eating well. Resting well. I was playing tennis every week. Practicing yoga regularly. Rock climbing several times a month. Going on hikes on the weekends. The only difficulties I had were a long period of stress at work and stress at home because we had a young toddler.
When these symptoms suddenly started in Jan 2014 I approached my family doctor, but I felt I wasn't taken very seriously. I was referred to a psychologist to treat my "anxiety". Sure I had anxiety, I was scared to death and no one was helping. I made multiple visits back explaining my symptoms, but I was getting no where. After spinning my wheels for a year and a half I switched doctors in Aug 2015. This new doctor took me seriously. I got an MRI (brain and neck), it was normal. I was then referred to a neurologist where I had a nerve conduction test. I was immediately diagnosed with idiopathic sensory axonal neuropathy. The sensory nerves in my legs had amplitude scores that were well below normal. A "normal" score is amplitude 10 or higher, my left leg was a 6 and my right leg was 5.
On one hand I was terrified when I got diagnosis. But on the other hand I wasn't surprised and I was thrilled to have confirmation that I wasn't crazy.
Since my diagnosis in Aug 2015, I've read countless material, videos, and studies on neuropathy. I'm a scientist and I love researching things to death. It's very frustrating because I don't fall into the common causes (diabetes, alcohol, HIV, Lyme, etc) and I'm outside the typical age range (which seems to be 55+) so most material on neuropathy hasn't been very helpful. The only thing I haven't fully ruled out is genetic screening, but no one in my family has obvious symptoms so it may turn up nothing. Despite that it's next on my to-do list
So that's my story! If anyone has any comments, questions or suggestions I'd be happy to answer!