Update – December 13, 2016

Since my last update, my pain levels have been on the rise again.   And so I must learn to deal with the ebbs and flows.  When I feel the pain, it makes me appreciate that much more how it is like when there is little or no pain.

On the “search for a cause” front, I believe I have some new evidence that leads me to believe that there is a high probability that my condition is auto-immune related.

One of the oddities of my condition, is the ever-present state of shifting symptoms.   About a month ago, I started getting canker sores, which was an entirely new symptom.

At first I wasn’t sure what the difference was between a canker sore and a cold sore, and had myself tested for oral herpes.  This came in negative.

I did some further reading on canker sores,

http://www.mayoclinic.org/diseases-conditions/canker-sore/basics/causes/con-20021262

and they also appear to be linked with some auto-immune conditions.

I know that one of my neurologists had previously speculated that my SFN (Small Fiber Neuropathy) could have been caused by a “post-infectious immune mediated response”.

And I know since my problems first began, I have often wrote in journal notes that my body feels like its under attack.

And so, my theory is, that either the antibiotic I had taken (within a month of when my symptoms began), some kind of infection, or some unknown environmental factor had triggered an auto-immune response.

For the upcoming year, my goal is to continue to research underlying causes, and explore in great detail any possible auto immune component to this.  I realize to many extent, it is like searching for a needle in a haystack, and essentially I must self study this aspect of medicine.

One thing that gives me some optimism, is that when I look back a few years ago, when I first started experiencing these different symptoms – I had no idea what was going on.

The knowing that something is wrong, but not knowing what – I think is perhaps the most challenging from a psychological perspective.   Particularly when dealing with constant misdiagnosis from numerous doctors.   Yet despite this, I have persevered and am at a point where I have a much greater understanding as to what has been happening.

I do have many misgivings with our current medical system, as patients should not have to wage a constant battle for appropriate diagnosis, causes, and treatments.   Unfortunately when we are dealing with complex, multi-faceted medical issues, these seldom can be adequately addressed in a 20-minute consultation.

And so, we as patients must continue to be advocates for ourselves, and as long as we have the strength we must continue to search for answers.

2 thoughts on “Update – December 13, 2016”

  1. Thank you for your thoughtful writing. I trust you will find a way through this. I am dealing with some similar issues and admire your thoughtfulness. Good luck with researching autoimmunity further.

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