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,
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.