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Small Fiber Neuropathy biopsy test results
Neuropathy | Last Active: Feb 15 2:46pm | Replies (36)Comment receiving replies
Hi Eve, I have been at it for 16 months now. The tachycardia is very scary. It worries me the most. I have a question I want to ask the neurologist. I have heart palpitations, I haven't had hair on my legs or under my arms for quite awhile, I have urinary retention, very bad silent reflux, and chronic gastritis. I have noticed days where I wake up and all of a sudden I feel spent and very tired. It is not always the same time of day. The metoprolol that I am taking can make you tired, however I asked the pharmacist about this and she asked me when I started taking it and it was in July of last year. It is also a low dose. She told me that people can experience being tired and it lasts from 7-10 days. She thinks that what I am feeling is from something else. Except for the tachycardia could I have all these other things as a precursor to the SNF. That is the question for the neurologist. I will make notes of what I read or think and then take it to the Dr. It can be very over whelming to try and remember stuff. I have noticed something else also. I am on the internet a lot and read stuff out loud to my husband. I have noticed that I mispronounce a lot of words. Not simple words. I sometimes have to say them more than once. That is bothersome to me. Not getting answers is hard. My numbers on my biopsy were as follows.
Low normal thigh= 8.3-9.1 abnormal = <8.3 my result was 1.21
Low normal calf= 3.8-5.2 abnormal = <3.8 my result was 1.15 that is not as low as some but its low.
Replies to "Hi Eve, I have been at it for 16 months now. The tachycardia is very scary...."
Hi mlorena! The symptoms you mention here sound like what I have read happens when SFN effects the autonomic nerves as well as the sensory nerves in the skin. This can cause the Heart symptoms you are having, and the bladder and gastric problems too. I am so sorry you are going through this. It sounds like this has come on rather suddenly since you mentioned pursuing medical answers for 16 months now. How is your blood pressure? Do you ever feel faint when you stand up? POTS can be caused by SFN effecting the autonomic nerves. I think the symptoms you are having would make you feel tired! Has your neurologist run blood work that looks for inherited causes of neuropathy, and also for autoantibodies? It would probably be helpful to get that checked. I was having difficulty thinking clearly, and also struggled to remember names of items, it drove me crazy. Interestingly, I stopped eating wheat (again), and found that my energy improved, as did my foggy brain. I was surprised, but also happy to find a solution, at least for now...I do not have Celiac's as I had blood work done to see if I have the genetics for celiac's, and I do not, even though my daughter does. Celiac's can cause SFN too. It can all get so confusing as things seem to overlap, and it is so challenging to find a doctor who will work with you rather than not really connect, and leave you hanging. Oh, how is your thyroid? Have you had it checked? It can cause many of these symptoms, and sfn has been linked to thyroid disease too. I try not to worry about what is happening for me, I keep very physically active, and my symptoms have progressed, with new ones popping in. I have begun sweating on my torso, and arms recently when I get warm (Summertime), this has never happened to me like this before, and my skin on my torso is having nerve prickles, and itching, while my hands, feet, legs, arms have more and more nerve stuff going on. But the stiffness in my hands, feet, legs is worse and worse. I am negative for all rheumatology blood work. My PA (at the neurologist) told me that there is so much they do not understand or know re SFN! That it could possibly be causing my stiffness, in the meantime I tenaciously continue looking for answers...As we all are.
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@mloren I have idiopathic SFN and also experience tachycardia. I understand how it can be scary and worrisome. Turns out I also have autonomic dysfunction and POTS (postural orthostatic tachycardia syndrome). All of these things are related and were diagnosed by my neurologist through lots of testing. Based on your comments above about your tachycardia, I wonder if you have POTS also. I took a beta blocker for awhile but didn’t notice any improvement, only side effects, so I stopped. I’m working with a cardiac rehabilitation doctor at Mayo and that’s truly been the best “treatment” so far. I haven’t found any medication to help the SFN/Autonomic Dysfunction/POTS and experience widespread pain, tachycardia, headaches, pins and needles, shooting pains, fatigue, etc. everyday. The cardiac rehab doctor works with me on exercises that are appropriate for my conditions and it really is helpful, motivating and overall, puts me in a better head space, helping my mental health too. Being in constant pain everyday takes its toll so it’s important for me to focus on mental wellness too.
I just wanted to share some of my story with you, as I see similarities and I know the tachycardia can be scary. I hope you find answers and solutions/treatments that work for you!
Wishing you well,
Robyn