Update – August 27, 2017

Since my last post, I had done the PET scan, which came in normal. I am extremely grateful for that.

As for the new nerve biopsy, it also came in normal. Though there was an issue with the report containing the wrong biopsy location (left versus right side), this was corrected and I was told it didn’t have any bearing on the results.

I still regularly feel nerve sensations.

No further explanation has been provided.

A recap of the most important pieces of information:

1. Nerve biopsy taken in July of 2016 showed significant nerve damage. I had sought the opinions of 4 different neurologists (in addition to the neurologist who performed the biopsy), all of whom gave me the same diagnosis of “idiopathic small fiber neuropathy”.

2. Symptoms began April, 2014. From April till June of that year, I had 3 panic attacks that wound me in the ER. On the reports, “parathesia” was noted, long before when I knew what either “parathesia” or small fiber neuropathy were.

3. QSART in my first Mayo Trip in May, 2017 tested positive for Small Fiber Neuropathy.

4. I had a low-positive test for the alpha-3 ganglionic AChR antibody, which has a link with Small Fiber Neuropathy and neurological autoimmunity.

5. I had tested negative on the TST (Thermoregulatory Sweat Test) in my July Mayo trip.

6. New nerve biopsy tested normal.

And so, it seems there is contradictory information. While my ability to manage this condition has improved quite a bit from when I first started this blog, I still do regularly feel nerve sensations, and so that has not gone away.

I have a couple theories about the contradictions in the tests results, trying to use simple logic (I have no medical background):

1. Biopsy

I don’t believe it is logical to presume that nerve density will be uniform throughout large sample areas of skin. Given that with non-length dependent Small Fiber Neuropathy, the nerves randomly fire off in different areas of the body, differences of nerve density and damage would seem to be quite likely.

Imagine a lightning storm – if you sample the earth from an area where lightening has not hit, it will produce a different result from an area that has been hit. Given that nerves are so small, I would imagine there would be variances depending on the specific biopsy location.

For my biopsy, while they were both taken from the foot and calf, there were measurable distances between the respective localized sites. For instance, for one foot biopsy, the sample was taken right by one of my toes, whereas, for the other – it was further back along my foot.

Secondarily, for the negative report, the initial stated biopsy location was wrong, and so I can’t completely discount that there was not a sampling error. Mistakes do happen. As for questioning the positive report, I feel reluctant to do so, given the fact that it validates my own daily experiences, and the fact that there are other tests, such as the positive QSART as well as the alpha-3 ganglionic AChR antibody test, which further indicate this issue.

2. QSART versus TST result:

From my experience taking the QSART test, it is localized, as it is applied to one area of the skin to measure its ability to increase sweat production, as well as release of acetylcholine.

Whereas, with the TST test, a dye is applied across your whole body, and you are heated up for about 45 minutes. As you sweat, the dye turns into a purplish color. And so, if you come out of the test drenched in purple, it means your sweat glands are functioning properly.

And so my theory on this, is that perhaps there may be localized damage, but the normally functioning glands are compensating for this? And so, as a whole, it looks normal, but when looked at in detail, an abnormality can be found?

In addition the the above, I noticed with the autonomic tests I had done previously, details of the results would change depending on who was doing the test. For instance, I did a table tilt test as University of Washington which came in as borderline-negative. At Mayo it was firmly negative. The QSART at University of Washington was negative. Yet at Mayo it was positive. Now, there is the same matter with the sensory nerve biopsy – Therapath being strongly positive, and Mayo being negative. Not precisely the exact location, and there appears to be procedural differences. And so, the world of Small Fiber Neuropathy can indeed be a murky one, filled with contradictions. And when a contradiction is found, its interpretation seems dependent on the underlying ideology of the doctor.

On my end, I’ll likely consult with my most trusted neurologist at some point to get her views on the above. When I do, I’ll be sure to write an entry about it.

At the same time, I think I’m pretty much through with the medical journey on this. Since there doesn’t seem to currently be a way of treating this, going to doctors seems to me at this point, to be pointless.

I hope over the next few years, my symptoms remain manageable, or hopefully go away over time. I do believe we are very close to the needed medical breakthroughs that will bring greater understanding as well as treatments for this condition.

From this point forward, my posts will likely be about tools for coping, or general thoughts, rather than the specific medical journey. I know there are many tools I have incorporated into my life which have been helpful, which I’ll write more about in future posts.

Wishing everyone a low (and hopefully no) pain day!