Small Fiber Neuropathy and Naturopathic Medicine – A Review of My Experience

After I had originally been told by a neurologist that my Small Fiber Neuropathy case is “idiopathic” and there is little that modern medicine can do, I revisited a journey towards naturopathic medicine.   Having little-to-no medical knowledge, I was open to exploring any path that might lead me to an answer.

I had originally seen a naturopathic doctor back when my symptoms first began several years ago.  Well meaning, and well intentioned, she spent a lot of time talking with me, and seemed to show a level of care and concern for my holistic situation – which I had not experienced in the traditional medical world (and would not until my SFN diagnosis).  She ran a bunch of tests to see which minerals and vitamins my body was lacking or had too much of.   She had me take a bunch of supplements to “correct” these “imbalances”, however it did not seem to solve my problem.   After months of visiting, I stopped going. At that time, my emphasis shifted to cognitive behavioral therapy, as I became convinced in the allopathic explanation that my condition was purely “anxiety”.

Like her allopathic counterparts, this naturopathic doctor was not able to correctly diagnose my situation at that time.   I don’t hold this against her, as it was obviously beyond her scope of expertise.  As for the tests she ran regarding vitamin and mineral imbalances, I was later told by a number of mainstream doctors that those tests often report inaccurate results.

My next experience with a naturopathic doctor came after my Small Fiber Neuropathy diagnosis, after I was told there was little that modern medicine could do.   This new ND I visited, again, took the time to hear my entire story, which I appreciated.  And she seemed to have an optimistic air that the condition was treatable, which gave me some hope – unlike my experience with traditional medicine.   She began to run various tests, and concluded that the cause of my condition was likely a series of “infections” and “co-infections” that my body was fighting.   She said that each “infection” was not serious, but combined they were causing a problem.   She prescribed for me a regime of supplements, and if that failed to produce desired results, she talked of using antibiotics to treat this.

Being that I still suspect my condition may have been triggered, in part, by an antibiotic I had taken several weeks prior to when my symptoms began, this caused an immediate red flag to go up in my mind.

I had taken her results to various neurologists as well as a few general practitioners.   They all told me that there is zero evidence that I currently have an infection, and said that all the results indicate is that I previously had some common infections to which my body had produced antibodies, but that there is no evidence that those infections are active at this point in time.

When I asked the naturopathic doctor about the differences in viewpoints between hers and the many mainstream doctors I spoke with, she replied telling me about new “research” in this area that validated her views, and claimed perhaps the other doctors were not current with this “research”.

Also, at the same time, I had been taking the supplements she prescribed.   One of them was super high levels of vitamin B, and I noticed when I took it, I often felt worse.   When I complained about this, she told me I needed to take more, and upped the dosage.  At this point, I stopped taking it altogether, and stopped seeing her.   I felt she was playing “doctor” with my life, and that there was a degree of arrogance in essentially telling me not to listen to what my body was loudly conveying.

Around this time, I had spent a lot of time online reading through various online blogs and forums, and noticed that people with mysterious conditions who go to naturopaths are often diagnosed with similar sounding terms such as “co-infections”, or told they have “lymes disease”, etc. and are prescribed intensive, expensive, ongoing treatments.  It seemed to be a trend.   Perhaps in some situations these diagnosis and treatments may be correct and helpful.    However, in my situation, it seemed that this line of thinking appeared to be more based on an ideological way of thinking on the part of the ND more than anything else.  And it made me wonder, how many people are out there who have been misdiagnosed by a naturopath, and prescribed treatments that are at best, ineffective, and at worst, dangerous?

I feel the need to share this, as I know how scary things can be when you have and/or are diagnosed with a condition, of which there is limited knowledge, and has no known cure.  It is natural that any human being is going to look to unorthodox places for answers.    Unfortunately, there are industries and individuals that feed off this desperation, either knowingly or unknowingly.   It is important to be aware of this, to be mindfully skeptical of the information you receive from others, and to analyze things from multiple vantage points.

With that said, I have nothing against naturopathic medicine as a concept, and would remain open to seeing an ND again in the future if I felt it was the right doctor and there was something new to be learned or gained through the experience.  However, I would do so with very tempered expectations and a hearty dose of skepticism.

Mayo Clinic Trip Update – June, 2017

Yesterday I concluded my first visit to the Mayo Clinic in Rochester, MN. I shall return again in Mid-July for the concluding 2 tests.   The following is a brief summary of what was learned during this visit:

* The small fiber polyneuropathy is still considered to be “idiopathic”, and so it can’t be treated given the limitations of current medical knowledge. I am still awaiting on the results for the paraneoplastic panel, which should arrive in about 10 days.

*  A sweat gland test that was done on my foot was indicative of small fiber neuropathy, which further validates last year’s skin biopsy.

* Despite whatever damage has occurred, the ability of the healthy nerves to function, detect sensations, etc. is within normal range.

*  There is no evidence of large fiber (motor) nerve damage

*  Whereas the autonomic nerve test I had done at the University of Washington was borderline in terms of suggesting autonomic nerve damage, the tests ran at Mayo thus far suggest that this is not the case, and that there is no evidence of autonomic nerve damage at this point.

*  I was told by a Doctor that around 20% of people with idiopathic small fiber neuropathy end up eventually having autonomic nerve damage.  If I have increasing severity of symptoms that suggest this could be happening, I can get tested again at that time.

*  As for what to expect in the future, I was told that each case is different.  There are some people who get better, others get worse, and some remain in a plateau.

*  I am to come back in mid-July to do another biopsy, along with a thermoregulatory sweat test (TST).   The biopsy would be conducted in the same locations as last year, to see the rate of difference in nerve density over that period of time.  And the TST will be able to ascertain the extent of small fiber damage across my whole body – and so I think that should also be a very interesting test.   It also further tests for autonomic issues.  These results could help to indicate what I can expect moving forward.  After this point, I’ll have another doctors consultation to review everything.

Also, I was prescribed a special topical cream that they custom compound in their pharmacy.  I got a small amount to test it, and if it is any good, I can get more when I come back (or have it delivered via their mail pharmacy).   My insurance doesn’t cover it, and it is very pricey…and so unless it works extremely well, it won’t be added as a long-term aid.   Also, I am a bit wary of this sort of thing, since my condition covers my whole body – and a topical should only be added locally to one specific area if there is a concentration of pain there.

Overall, I have to say, I was highly impressed with the Mayo Clinic. I like how they coordinate all the tests within such a short period of time, and have the results back nearly immediately.   Scheduling and re-scheduling happens seamlessly and without issue.   The staff are very friendly and seem very knowledgeable in their specialized areas.   They also seemed to take the time to gain a holistic understanding of the issue.

The clinic itself is more like a giant medical campus, with various large buildings, all extremely well designed. There are art work adorning the various entrances and walkways, including Chihuly glass art as well as Andy Warhol paintings.   I even saw an area where some of the staff were performing a small opera during lunch time for some patients.   This is not something one would regularly see in a hospital, and I think it reflects on something special within the Mayo Clinic culture.

And so, that is it for now. Wishing everyone lots of low (or no) pain days ahead!