Peripheral Neuropathy Community
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?small fiber neuropathy?

I am a 38yo mother of 3 who works full time and was an avid runner. I have always been fit and healthy and had no medical problems. I started experiencing numbness and tingling in my right hand in 9/2013 and had been having intermittent tingling in bilateral toes when running for over a year at that time. Both were not that bothersome, but just a weird annoyance. In 9/2013, The tingling moved up into my right arm and I went to my PCP. While I was there, I received the flu vaccine and was scheduled for MRI and Nerve conduction studies. Over the next two weeks, I went on to have weakness and worsening of numbness and tingling in all extremities and tingling on my face.

Weakness increased until I was unable to grip in my hands and had trouble walking - I felt like I had lead weights strapped to my entire body. I was hospitalized. All labs (extensive check for thyroid, diabetes, autoimmune problems, vitamin deficiencies, etc) returned normal. MRI showed two small non-enhancing white matter lesions, but otherwise no diagnosis. Nerve conduction was normal.
Since hospitalization, my symptoms have improved but many persist. I have been seeing an MS specialist - (who doesn't think that I have MS). ENT - for the dizziness, and had a second opinion from a neurologist who told me I have anxiety. I am sure that it isn't anxiety, but I took anti-anxiety medication for 8 weeks because I am willing to do anything to figure out what is going on and find some improvement, but I had no change in symptoms.

Currently my symptoms are:

1. I have a tingling/burning sensation in all four extremities and in my face/scalp and neck. - this worsens when at rest and improves when I am active - but never goes away. I would describe it at times like I have something pressing around my arms (like a blood pressure cuff) and my feet feel like they are surrounded by blocks of ice - I sometimes can't even feel where my feet and hands are.

2. I have significant dizziness - I feel like I have been drinking when I have not - worsens when I go from lying/sitting to standing

3. I have significant fatigue - at times overwhelming - I've never been one to take/need naps, but I feel like I can never get enough sleep

4. I have patchy hair loss and decreased sweating in my legs. I have extremely dry and cracking skin on my feet and hands

I have been researching my own symptoms and learned about SFN. I think my symptoms may be explained by a sensory and autonomic small fiber neuropathy and wanted to know if anyone else's experience was like mine and what to do next to pursue this.
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