Hi mlorena,
Thank you for sharing what you have experienced with non length dependent sfn, I have been researching, trying to understand just what the symptoms for this are. It must be very disconcerting to have your Heart effected in this way! I also noted the comment on my lab report regarding hands versus feet, as my hands were the first place I noticed, and have developed right along with my feet. But I also have zips, zaps, shooting pain, painful skin, and a lot of itching in other areas of my body. My hands and feet are progressively more and more stiff too, I have no idea if this can be from SFN, but it has developed in tandem with my sfn symptoms. My neuro office has ordered a lumbar MRI to rule out any nerve impingements as possible cause of symptoms in legs, esp right leg. I don't expect them to find much. I am having trouble with Summer heat, as I did last Summer for the first time, I seem to struggle with extremes of temperature, both cold and hot. I am sweating on my torso, and arms, much more than ever before, and experience light headedness. In the Winter it is the opposite, I am cold, especially my feet! The skin biopsy on my foot was low normal, they consider this to be positive, but above my ankle was normal, they did not do one on my thigh. I have had strange ongoing problems due to the skin biopsy which I understand is highly unusual. When I see the neuro, after the MRI next week, I think I will ask about non length dependent sfn. I do feel nervous about having another skin biopsy as I do not want ongoing nerve reactions in more than one location. I appreciate having a place to communicate about this mystifying problem, I have been diligently trying to discover what is happening with my body, for 2 years now, the sfn is the first result I have gotten so far.
Hi Eve - I too have been trying to get as much specific information I can on my idiopathic PN, thinking that I can focus therapies on what seems to be working best for the folks on here that know more about their type of condition. Except for the sweating, our conditions sound so similar, especially your heat and cold extreme intolerance. However, I have been told that I have severe axonal PN, shown positive by EGD results, so Neuros have said no need to test for SFN. I’m curious, did you have an EGD/nerve conduction study?