A few weeks ago I had an appointment with my neuromuscular neurologist. He told me the tests I took to find an underlying cause for my SFN (Small Fiber Neuropathy) all came in normal. He ordered one final test, which he said is an extreme long shot. Aside from that, he knew of no other tests that I should take. He said that my case is, with almost certainty, “idiopathic”, and that the only thing I can do is to start taking medications to deal with the pain. I’m putting off taking pharmaceuticals for as long as possible, and plan to create a separate blog post in the near future on this issue.
When I asked him about a “Paraneoplastic Panel” which my Skype neurologist had told me about, he told me that I had already taken that. Given that I am unsure who is correct (since both Doctors reviewed all my records), I’ll seek out a third opinion on this.
Another issue I brought up with the neuromuscular neurologist, are sensations I often feel in the area of my heart. I’ve brought this up with other neurologists, who either overlooked this, or told me that it is a normal part of having sensory neuropathy and won’t do any harm. This particular doctor told me he never heard of anyone experiencing that with SFN. When I asked him if it should be looked into further, he basically told me the issue is just anxiety and that I would be better off going to a psychologist / psychiatrist to deal with that (which of course, is something I have done for the past couple years since my whole issue first started).
I do find it frustrating that sometimes different doctors will tell you different things, related to the same issue. And so, there appears to be either a lack of standardized knowledge, or a lack of consensus when it comes to SFN.
Another difficult thing, is that since we are kids, we are taught to “listen to our bodies”. In my case, if I listened to my body, I would be in the ER frequently. And so, I’ve learned to do the opposite, and to ignore what my body is signaling. Without learning to ignore, it would be difficult to function in day-to-day life.
If this matter is not entirely “anxiety” and can’t be explained by Small Fiber Neuropathy, logic would lead me to consider the possibility that my neuropathy might be affecting some of the automatic nerves. In the future, I will continue to ask about automatic nerve testing.
With that said, over the past couple weeks my pain levels have been somewhat lower overall, which I am happy about – though I do get unpleasant flare-ups. Also, sometimes my memory seems to be a bit foggy. I find that getting good sleep, and taking frequent naps, is helpful. I’ve also gone gluten free, and have been drinking fresh juice, eating salads, etc.
I’ve also began the audio book “The Brain’s Way of Healing” by Norman Doidge, which talks about the subject of neuroplasticity and how the brain can use this to control pain. It is a follow up from the book “The Brain that Changes Itself”, which I felt was exceptionally well written. Sometime in the near future I am planning to create a book review section of this website, where I can go into further detail on some of the books related to this subject.