Allergist Appointment – October 19, 2017

This morning I visited with an allergy doctor. Given that my health insurance is going to be drastically changed and more limited next year, I decided it would be best to use the benefits I have this year to do this.

My expectation when I visited, was not to find a cure for the Small Fiber Neuropathy.   Given that I can say with near 100% certainty that the condition is autoimmune / immune mediated, I wanted to gain an understanding as to what foods and/or environmental toxins I could be sensitive to, in order to not inadvertently provoke my immune system into action.

The doctor ran a bunch of tests for various allergies, all of which came back normal.   He was very understanding and told me it was good that I was doing my “due diligence” with the matter.

I also had been curious if I have some sort of penicillin allergy, since my symptoms began several weeks after taking a penicillin-based antibiotic.   The Doctor told me that while he could do a test, the test would only apply towards immediate allergic reactions.   He said there are some cases where allergic reactions can be delayed for a variety of reasons – however, there is not any way to test for that.

Given that I had not experienced any immediate symptoms when I took the penicillin-based antibiotic several years ago, it was unlikely that the test would show anything, and therefore I decided it is not worth doing.

The allergist ultimately drew the same conclusion as my most trusted neurologist.   He thinks that at some point I had some kind of mild infection/illness, which triggered an auto-immune response.   He said there is no way to prove or disprove that the antibiotic had anything to do with it (whereas my neurologist told me the antibiotic could have been one component of a sequence of events). The allergist also said that doctors right now lack a lot of information in this area of medicine, and so a lot is unknown.

Therapy Fans for Small Fiber Neuropathy

This post is a sequel to my “Power of Ice” entry I wrote just over a year ago.

I learned over the course of this year, that small, powerful handheld fans can be nearly as powerful as ice.

My theory is that the bombardment of the sensory nerves with the cool wind of a fan can help to scramble some of the bad signals. It provides a form of competitive stimuli.

It can also be calming and soothing.

I bring mine everywhere I go, to meetings, restaurants, busses, etc. It is cool and quite powerful. I often get positive comments on it, like “That is such a great idea!” from people who don’t realize I have an issue. I’ve often joked that I should become a fan salesperson, as I’ve become very passionate about my fans.

The following is the fan I use when I’m out-and-about, which I purchased around 6 months ago. It costs around $14 on Amazon. It can be viewed by clicking here.

It seems to be holding up, though in the past month the stand has become a little lose.

I also keep large Lasko Wind Curve fan by my bed.  In conjunction with this, I keep a small fan on my bed frame.

While obviously fans are no cure for SFN (how I wish they were), in my own experience I’ve found them to be helpful in providing some relief, as well as keeping a measure of control over what you are feeling, which could help to keep the corresponding anxiety in check.

Update – October 5, 2017

I had my final consult with my most trusted neurologist. Barring extraordinary circumstances, I don’t plan on doing any more consults for an indefinite period of time.

She had reviewed all my records from the Mayo Clinic, as well as local providers.

Regarding the difference between the Therapath and Mayo biopsy reports, she told me that there are different processes. She said that Mayo’s tests only the epidermal nerve fibers, whereas Therapath’s tests both the epidermal nerve fibers as well as sweat glands.

As for the various conflicting test reports (which I detail in the August 27 post), she told me my diagnosis remains SFN, as the symptoms remain, and there is enough evidence from all the tests to validate the underlying issue.

She advised me in 1 years time to take another test for the alpha-3 ganglionic AChR antibody, to see if the titer has changed. She said there is a link between this antibody and SFN, and given that I have a low-positive for it, it could be connected.

She said there is research currently being done, which indicates there are other obscure antibodies that could potentially be playing a role in idiopathic SFN cases. And so if it’s not that one, its likely something else that is just not known right now. She then went on to tell me about some of the current research being done.

I hope over the coming years, more will be known about the exact antibodies that cause this condition and how it can be treated.