Update – January 23, 2017

This morning I had an appointment with a Rheumatologist.   She seems to share the view that my condition is likely autoimmune related.  She ordered an additional 24 blood tests.   She also told me that even if they all come out normal, it still wouldn’t rule out an autoimmune condition, as some of them are currently unknown, and so there is no test for them.

Over the past month, I’ve had a few new symptoms, which include dry and irritated eyes, as well as red patchy areas, which come and go on my skin.   Also, I occasionally get spontaneous small cuts on my hands, which has never happened to me before except since last month.   And I still continue to get occasional canker sores (which again, is a relatively new symptom).

I have to say, I am grateful that I do have some physical symptoms, which are relatively superficial in nature.   Because of this, I can photograph / document these things, for the doctors to see.

I have come to learn that showing physical evidence (whether it a nerve biopsy, or a picture of a physical issue) is critical to creating a sense of urgency among medical practitioners, and for them not to brush aside my symptoms as being “anxiety” related.

My pain levels due to the SFN continue to come and go in ebbs and flows, but the intensity of the pains seems to be increasing with time.   The past couple weeks has been in an uptrend from my average, but that could just as well reverse itself.  It can be quite unpredictable.

For pain relief, I continue to use ice packs (in small time increments), keep my windows open (to get cold blasts of air), listen to hypnosis, take warm showers, etc.   I am also doing things to keep my mind as distracted as possible.   I sometimes use GABA supplements as well as Bach Remedy Spray, which I find has the tendency to create a temporary calming effect.   A friend of mine recently bought me a diffuser for the holidays, I find using essential oils to be calming.  During times when it gets really bad, I do a lot of praying.   All these things help.

I also continue to do my best to keep my mind focused as positively as possible, and would like to think that regardless of however this unfolds physically for me, that spiritually I am growing and will continue to grow and head in the right direction.

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.

Update – December 6, 2016

I am happy to report that my pain levels continue to be lower. I had mentioned this to be the case at the end of my last post, and this trend has continued. Though I can still feel ongoing low-level nerve sensations, as well as more intense pain flareups from time-to-time, and know that the process of nerve destruction continues at some pace, I have not felt the need to sleep with an icepack and generally feel somewhat better.  I’d say the quality of my life has been improving.   Occasional brainfog has been my most bothersome symptom over the past several days, though I feel I am somewhat accustomed to that.   I continue to read and immerse myself in different activities to counteract this.

A few things I think may be helping on the pain front:

  1. I’ve gone gluten free since around a month ago.   I’m not sure if its coincidental, but I think this may be helping. While I did not test positive for a gluten allergy, its possible that I have a sensitivity which inflames my system, serving to worsen the problem. I might research this further.
  2. I’ve been listening to the audiobook “The Brain’s Way of Healing”, and have been diligent in practicing one of the pain management techniques it delves into.   It involves visualizing the damaged area healing each every time you feel pain, in order to help foster new neural pathways.  I’ve also been doing hypnosis which I think is very helpful.  I plan to write a separate blog entry about in the near future.
  3. Over the Thanksgiving week, I took a vacation to Hawaii. I’ve noticed there is a constant, sea breeze there. I think this is very helpful for the nerves. Prior to this trip, I noticed when I take showers, pain seems to be a lot less during the showering process. I think this is the case, in part, because the process of showering bombards the sensory nerves, triggering pleasant signals which counteract or distract the mind from the pain sensations. I had been wondering if there is a way to replicate the shower sensation outside of the shower – and when I was in Hawaii I had an “aha” moment when experiencing the constant pleasant winds. In the future, I think I will invest in some fans I can setup where I live to try to simulate this.

Separately, as of several weeks ago, I decided to stop taking nearly all the supplements I had been taking that my  naturopathic doctor recommended. I suspected the dosages she was giving me were too high. Given that my pain has lessened, it makes me further question that road.   I think from each doctor I have seen, I have learned various tidbits of truths, but the path to gain a holistic understanding will continue to be my own journey.

Currently, I still take hemp extract CBD oil, along with GABA and Bach Rescue Remedy spray.   These help with anxiety – particularly the GABA supplement combined with the hemp extract CBD oil.   The Bach Rescue Remedy spray may simply be placebo, I don’t know.

As for medications, I have not used the Gabapentin that was prescribed to me. It is interesting, that the neurologists I have spoken with about this, pretty much tell me its safe to use, particularly in low doses. However, the FDA label has some pretty bad side effects in it, including 1 in 500 people becoming suicidal.   I’ve read some really bad patient reviews of it, including people who start hallucinating and hearing voices. I really don’t want to mess with a drug that could do that.   At the same time, about half the people who use it, seem to get a very good benefit from it, and so I don’t discount that. I just don’t think in my situation it warrants going down that path, unless my pain was at a 8+ level every day, and simply had no other choice.  As of today, this is not the case.

I have also read that Gabapentin may effect neuroplasticity, which is the brain’s ability to change and adjust to its corresponding environment, learn new things, etc.   Neuroplasticity represents my great hope at the moment, that I will be able to heal naturally. I do not want to do anything that could potentially close this window of hope.

Given that I feel my condition was likely triggered in part by an antibiotic I had taken a few years ago (which I wrote extensively about in my Oct 3 post), I remain ever-the-skeptic when it comes to pharmaceuticals, and am well aware of the unintended consequences that can occur when the risks are downplayed or glossed over.

And so, I continue down this path, in hopes that the pain will continue to be at low and manageable levels – and will appreciate each and every moment when it is 🙂

Update – November 23, 2016

A few weeks ago I had an appointment with my neuromuscular neurologist.  He told me the tests I took to find an underlying cause for my SFN (Small Fiber Neuropathy) all came in normal.  He ordered one final test, which he said is an extreme long shot.  Aside from that, he knew of no other tests that I should take.  He said that my case is, with almost certainty, “idiopathic”, and that the only thing I can do is to start taking medications to deal with the pain.   I’m putting off taking pharmaceuticals for as long as possible, and plan to create a separate blog post in the near future on this issue.
 
When I asked him about a “Paraneoplastic Panel” which my Skype neurologist had told me about, he told me that I had already taken that.    Given that I am unsure who is correct (since both Doctors reviewed all my records), I’ll seek out a third opinion on this.
 
Another issue I brought up with the neuromuscular neurologist, are sensations I often feel in the area of my heart.  I’ve brought this up with other neurologists, who either overlooked this, or told me that it is a normal part of having sensory neuropathy and won’t do any harm.   This particular doctor told me he never heard of anyone experiencing that with SFN.   When I asked him if it should be looked into further, he basically told me the issue is just anxiety and that I would be better off going to a psychologist / psychiatrist to deal with that (which of course, is something I have done for the past couple years since my whole issue first started).   
 
I do find it frustrating that sometimes different doctors will tell you different things, related to the same issue.  And so, there appears to be either a lack of standardized knowledge, or a lack of consensus when it comes to SFN.
 
Another difficult thing, is that since we are kids, we are taught to “listen to our bodies”.   In my case, if I listened to my body, I would be in the ER frequently.  And so, I’ve learned to do the opposite, and to ignore what my body is signaling.  Without learning to ignore, it would be difficult to function in day-to-day life.
 
If this matter is not entirely “anxiety” and can’t be explained by Small Fiber Neuropathy, logic would lead me to consider the possibility that my neuropathy might be affecting some of the automatic nerves.  In the future, I will continue to ask about automatic nerve testing.
 
With that said, over the past couple weeks my pain levels have been somewhat lower overall, which I am happy about – though I do get unpleasant flare-ups.  Also, sometimes my memory seems to be a bit foggy.   I find that getting good sleep, and taking frequent naps, is helpful.  I’ve also gone gluten free, and have been drinking fresh juice, eating salads, etc.  
 
I’ve also began the audio book “The Brain’s Way of Healing” by Norman Doidge, which talks about the subject of neuroplasticity and how the brain can use this to control pain.  It is a follow up from the book “The Brain that Changes Itself”, which I felt was exceptionally well written.  Sometime in the near future I am planning to create a book review section of this website, where I can go into further detail on some of the books related to this subject.

 

Update – October 20, 2016

Earlier today I had a Skype call with a neurologist I had been speaking with on occasion since earlier this year. She was the first person who had ever mentioned the words “Small Fiber Neuropathy” to me, and played a very critical role that led to my diagnosis.

She reviewed all my medical records to date, including the various tests I have taken.

She told me that the nerve biopsy had revealed substantial damage. At the same time, she said nerve damage and symptoms don’t necessarily correlate linearly, and that I seem to be doing OK.  I felt that these words were a little overly optimistic, since often I don’t feel OK.  Then again, I think “OK” is a relative term, and I am sure she often sees cases that are far worse than mine.

She said while based on my current tests, there is no evidence of an underlying infection, the nerve damage could be caused by a “Post-infectious immune mediated” response.   She advised after the next round of blood tests, if the condition continues to get worse, I should ask my neuromuscular neurologist about ordering a “Paraneoplastic Panel” at the Mayo Clinic:

http://www.mayomedicallaboratories.com/test-catalog/Overview/83380

She also advised me to repeat the skin biopsy in one year’s time to compare the results.

She also said I may want to try a gluten-free diet for the next couple months and see if that helps.

As for medications, she said I can try the Gabapentin that my neuromuscular neurologist prescribed should my condition get worse and I feel the need to take it.

I was satisfied with the consultation, as I feel I have a continued game plan for further testing, which hopefully produces the answer to an effective treatment.

Treatment Review: Mild Hyperbaric Oxygen Chamber

Over the past month I have been trying mild hyperbaric oxygen therapy. I have completed around 9 sessions, and had been going 2x per week. My naturopathic doctor had recommended that I try this. She said it wouldn’t cure my condition, but that it might help to stop its progression as well as promote nerve regeneration. I had read some studies on this that were positive, and so I thought it was worth a shot.

As I researched this further, I learned there are 2 types of hypberbaric oxygen treatments, soft-chamber (mild) and hard chamber. The hard chamber requires a doctor’s prescription, and is the more potent of the two. It can also be a lot more costly. Being that Small Fiber Neuropathy is an “off label” use, it is not covered by insurance.

I decided to try the mild chamber at a place that is about a 30 minute commute from where I live, per my naturopathic doctor’s recommendations. It was very expensive, with a 30 minute session costing me $90.00. And so I searched online,and found an alternative place that offers 3 1-hour sessions for $99.00. This equates to around $33 per session, which ends up costing a fraction of the price. However, the downside is that this place is 1 1/4 hours commute each way by bus from where I live. Being that I work for myself and can do my work remotely, I still had the ability to go to this place, however, it is an inconvenience for me. Nonetheless, when you are in pain and are desperate for a solution, you will do whatever it takes. I figured I would try this out, and if it worked – I would buy a mild chamber I can use at home, which would cost a few thousand dollars.

The first couple times I tried the therapy, I would say the results were subtle and mild. My body seemed to like the therapy, but at the same time, it didn’t seem to have any effect whatsoever on my nerve pain. Nonetheless, I wanted to give it a fair and proper try, and so I kept with it.

After having completed around 9 sessions so far, I have come to the conclusion that it’s a nice supplemental therapy, which probably produces some helpful benefits. However, in my case – it doesn’t seem to be slowing my condition, nor improving my nerve pain. Therefore, I no longer feel as motivated to spend the time or money further persuing this. I may at some point, go to a doctor specialized in this area to try the hard chambers.

In the meantime, I’ll likely devote my time and resources to trying other modalities of therapy.

Update – October 13, 2016

On Monday I had an appointment with a neuromuscular neurologist, as my primary neurologist had recommended that I see a sub-specialist. I had lucked out, as there was a cancellation, and so my appointment was bumped up by a month.

He reviewed my records to date, and is having me run some additional blood tests. One of the tests is for impaired glucose tolerance, which he said would be among the most common causes of SFN. He seemed surprised that no one had yet recommended I take this test.

He also mentioned to me how small fiber neuropathy can be very frustrating for doctors, as half the times the cause remains unknown. Doctors like to see clear causes and treatments to help patients.

He also told me how on occasion, SFN can go into remission. Perhaps I might be one of those lucky cases.

We also discussed my naturopathic doctor’s tests and treatments. He told me that based on the info I have thus far, there is no evidence that I have an infection that is causing this condition. He also cautioned me about dosages when taking B vitamins, as high levels of B6 can cause neuropathy. He seemed very skeptical about naturopathic medicine. Nonetheless, he told me if he was in my situation, he would probably do the same thing as I am currently doing – as traditional medicine does not offer much without a known underlying condition.

I also brought up my antibiotic theory. He said it’s a possibility, since the neurotoxic effects of some antibiotics are becoming more well known. He also mentioned how the FDA had been years behind the ball with the warning labeling of Flouroquinolines.

As for treatments, the doctor prescribed me 100 mg of Gabapentin. I explained to him my aversion to pharmaceuticals, which he understood. I will try to put off using pharmaceuticals for as long as possible, and will only take them if I am consistently in 8+ level pain, and am at the point where it is simply unbearable.

He told me I could try it out at any point if I choose. He said the dosage is very small, and so it is likely that I wouldn’t feel anything after taking it. Nonetheless, while I plan to have the prescription filled, I also plan to hold off taking any.

I plan to see him for a follow up appointment in one month’s time.

Overall, I was very glad to have met with this doctor. He seemed to be a lot more knowledgable about Small Fiber Neuropathy compared with other doctors I talked with. He also seemed to have an ability to view things in an understanding way from my perspective, which I deeply appreciated.

My Story and an Update

Written August 15, 2016

I’m going to post about a deeply personal issue to me, as it has caused me a lot of needless suffering over the past couple years – and I am uncertain how it will unfold over the future. I want to raise awareness about this, and sincerely believe that if this helps just one other person, it would have made my journey through this mess worthwhile.

Be very careful when taking antibiotic drugs, or any medication, and always ask about the side effects. If possible, verify through your own research. Doctors and pharmacists may neglect to disclose the side effects if you don’t specifically ask, downplay the risks, or unintentionally omit information. Also, FDA warning labels, by the FDA’s own admission, are not always reliable, and may downplay risks that are published in medical literature. I learned the hard way. Please do not make the same mistake that I did. Something that seems so innocent can change and alter your whole life.

I have recently been diagnosed as having “Small Fiber Neuropathy”, which is a condition that affects the sensory nerves of the body. These nerves are responsible for communicating a myriad of pains, as well as temperature, in both your skin as well as organs. It is a chronic, often life-long condition that can be extremely painful, and in some cases progresses to become debilitating.

I know it might sound strange, but this diagnosis comes as a great a relief for me. For over the past 2 years, I knew that something was wrong, but didn’t know what it was, nor the reasons behind it. It was a baffling mystery, which a myriad of doctors had labeled as “anxiety”. Now, I have the comfort of knowing the truth.

After doing further research on nerve issues since my Small Fiber Neuropathy diagnosis, it seems, in all probability, that my condition was caused by neurotoxicity induced by an antibiotic drug I took back in March of 2014.

Here is a brief summary of the journey that led me to this point:

In April and May of 2014, out of the blue, I began having panic attacks. I was diagnosed at the time as having anxiety. It felt like my body was constantly being attacked. Something was amiss. I regularly felt “on edge” for no reason. Things that I used to take for granted – such as driving a car or flying on an airplane – suddenly became a problem. When having conversations with others, I often felt myself going into a state of dissociation. I would have terrible nightmares. Many times I felt like I was completely going crazy. And I had a wide array of other symptoms. What is odd – is that my life up until this point in time was quite good. Nothing had drastically changed to warrant such a huge psychological shift.

Perhaps among the more disconcerting symptoms I felt, was occasional, random nerve pain – the feeling that I was randomly being stabbed by a pin, or zapped with an electric shock in different parts of my body. Yet, I was told by multiple doctors, that this too was a form of anxiety.

As for the cause of the anxiety – it was deemed to be either “genetic” or “psychological” in nature, depending on which doctor I would speak with. These are very broad, vague classifications, based on two competing medical ideologies on how to treat the condition.

In order to resolve my issue without the use of medication, over the course of the months that followed, I started going to cognitive behavioral therapy. The therapy was helpful for me to build coping mechanisms to deal with what I was feeling. But yet I couldn’t understand why my brain suddenly switched. It made no sense to me. At the time, I remember saying “The term ‘anxiety’ doesn’t seem like an appropriate term. It feels more like my nervous system has been dysregulated”. Instinctively, I knew something had prompted that dysregulation, yet I did not know what it was. Unfortunately it would take me over 2 years to understand what had happened.

After about 6 months from my initial symptoms – through the therapy, and learning from doing lots of reading on the subject, my life began to normalize on the surface level. I could eventually do all the things I enjoyed doing before, including traveling vast distances. But inside, there were always struggles. While the coping mechanisms were in place and extremely helpful, it didn’t cure the underlying condition. But I was accepting of that and learning to deal with it in the best way possible. It was becoming my “new normal”.

Then suddenly, in March of this year, I started feeling a huge uptick in nerve pains. The feelings of randomly being stabbed by a pin or electrically shocked in random parts of my body escalated, to the point where on bad days, I would feel it hundreds of times. For sure, these strong, painful, physical sensations couldn’t just be “anxiety.”

In the months that followed the pain seemed to get progressively worse – I felt random burning sensations on my skin, pain and numbness – particularly in my fingers and toes, but also throughout and inside my body. And the electric shocks continued. Sometimes at night I’m awaken from my sleep feeling that I’m on fire, inside and out – or being jolted awake periodically by the feeling of an electric shock to a random part of my body. Of course, these physical sensations and pains produce a good deal of anxiety, particularly when I did not know their cause nor nature.

I must also state, that I have periods of respite, where the symptoms abate. These periods can last for hours or days – which I deeply appreciate with every ounce of my being. It comes and goes in waves and with varying levels of pain.

I went to several neurologists, had a bunch of tests done (2 MRIs, EMG, tons of blood tests, etc.). The process took months, due to long wait times. Everything came in normal, except for one, for a condition called “Small Fiber Neuropathy”, which essentially means that there is physical evidence of the sensory nerves being damaged. This diagnosis was extremely important for me, because many of the initial doctors I had consulted with when my problem first began, led me to believe the problem was “all in my head”. These doctors were wrong.

According to the neurologists I spoke with, based on the volumes of tests I have done thus far – my diagnosis of “Small Fiber Neuropathy” is most likely “Idiopathic”, meaning there is no known cause. Approximately 50% of Small Fiber Neuropathy cases don’t have a “known cause”.

But yet there is a cause.

While reading through various articles about nerve conditions, I stumbled across one that talked about the FDA increasing its warning label on a class of antibiotics, due to its link with serious and sometimes permanent nerve damage.

And then, the Eureka Moment! The proverbial light-bulb went on in my head. I suddenly remembered that I had taken an antibiotic medication for a minor infection on my finger, around the time when I had my first panic attack.

I looked up my medical records, and long behold – I had taken the medication about 3 – 4 weeks before my problems began.

The antibiotic that I took was different from those mentioned in the article. And so I delved a little deeper into some medical journals.

Apparently, the type of antibiotic I took can also cause “neurotoxicity”, and the specific mechanism behind this, is “Inhibition of GABA-A receptors”. Essentially, GABA helps keep pain signals in check, and if its transmission is inhibited, it can cause both neuropathic pains and severe anxiety. I have read through studies that affirm both. Based on everything I have read about the implications of this, it seems that it mimics my condition exactly based on my experiences.

Aside from my theory above, I’ve also read research linking antibiotics with autoimmune disorders, which also has a direct connection with Small Fiber Neuropathy. And so various paths converge on Rome.

Considering that I had taken this antibiotic shortly before my problems began, and the fact that after seeing so many doctors, no other explanations exist – it seems logical to conclude that neurotoxicity – whatever that fully entails, is the most reasonable, and in fact the only explanation to date. While I am sure there is more to this explanation, and a sequence of events induced by the medication, far more complicated than what I described might be responsible, I do think there clearly is a definitive link to my condition and an adverse reaction produced by the antibiotic I had taken.

I find it very odd that not one doctor I can recall, ever asked me had I taken medication previously before the onslaught of the symptoms. As I remember, they just asked if I currently take medication, or have allergies.

Given that around 50% of Small Fiber Nueropathy cases are “idiopathic”, it makes me wonder how many of these millions of affected people got their condition due to side effects of antibiotic use, and their doctors just failed to connect the dots by asking common sense questions?

And so these people are forever left wondering – why they have their mysterious, sometimes debilitating condition – further adding to their psychological and physical stress.

Being that there are so many antibiotics prescribed, and the potential for neurologic effects is so widely available in medical literature – shouldn’t this be an area to be looked into for the “idiopathic” cases?

The same would apply for severe anxiety, or any other issue that can have an underlying neurological cause.

I believe there is a human tendency that makes it hard to empathize with the unseen pains of others, when those pains are both invisible and have no specific classification. I cannot tell you how many times others have said to me “you look so healthy”, having little idea how I’m feeling inside – and how difficult it can sometimes be to remain composed when your body randomly sends you pain signals in varying forms. Even if your not experiencing pain in that moment – sometimes the mind wanders and anticipates “When will the next shock come”. I really think that if peoples pains can be physically seen, the medical community would be a lot quicker at connecting the dots it currently often dismisses. Given that such unseen conditions impact many millions of people – it deserves a high level of human consciousness.

And on a final point, I want to touch broadly on medical ethics and transparency. This I think is the most important issue at the moment for both you as an individual, and us as a society, as it is the most actionable.

Lets presume for a moment that I am wrong in my connecting of the dots, and that for whatever reason – despite the potential neurotoxic effects of the medication I took just before the onslaught of my neurological symptoms, that was not the cause of my condition.

Regardless of this, on a human-to-human level, did not both the doctor and the pharmacist have an ethical and moral duty to proactively disclose to me the potential side effects of a drug they advised I take? Even if the risk was very small, I would never have taken that risk to deal with a relatively minor issue.

Now I realize some may claim that doctors and pharmacists may not know, and can’t be expected to know the risks involved with everything. And so, they must reference FDA labels for guidance, which seems like a pretty haphazard process to me. Nonetheless, it leads me to my next point.

With FDA labels, risks appear to be buried in the “fine print”, and when I looked up the label of what I had been prescribed, the warning label seems to dramatically downplay the risks. The very first sentence in the “adverse reactions” section claims the drug is “generally well tolerated” – which seems hardly an appropriate way to begin discussing risks.

Further down, there are various risks listed, many being more benign, and some serious. Overall though, it seemed to lack details I’ve found elsewhere. I’ve read medical journals, as well as various patient accounts online that differ significantly from what the FDA has written – and my own experience can testify to the truth of this. While I’m not one for conspiracy theories – it does make me wonder if there is a cozy connection between the FDA and big pharmaceutical companies. An uncompromised FDA would provide warnings at the top, that are both objective and transparent, presenting all relevant information to would-be-consumers to make informed health decisions. It also would not begin such warnings with words saying that this drug “Is generally well tolerated”, which creates an inherent mental bias for the doctor referencing the label, the pharmacist, as well as the patient. And this is particularly dangerous when the risks, no matter how small, are so severe and life-altering.

Patients have a right to know upfront what the risks are, and to make their own risk-reward decisions. I was denied that right, and am now suffering for it.

There are many others who suffer under similar circumstance. We are the statistical collateral damage, who reside outside the phrase “generally well tolerated”. We have names, faces, and stories. We had a right to know in a clear and upfront manner the risks.

And so, I would implore everyone reading this – do your research before taking medications. Ask yourself if taking that medication is something you really need to do. In some instances that answer may be yes, and in others no – it is for you to decide and not someone else. Don’t blindly trust someone simply because they have a white coat and lead you to believe that something is safe. Be your own advocate. Ask questions. And never, ever let anyone make you feel that you are crazy simply for communicating the pains that you feel. Ignorance comes in all forms – and too often the most educated among us fail to realize that the most important information is often what is not known. The science and art of healing should be treated with a measure of humility.

I know that language can be limiting, and it will be impossible to convey the great mental, emotional, physical, and spiritual challenges these types of conditions can place on a person. And the fact that it is so needless, and can be so easily remedied in many instances, makes me want to scream out – not out of anger, but out of compassion so that others may be aware of the dangers and preserve their state of health.

Please, be well, and deeply appreciate with the utmost, every moment of your life that you can enjoy in good health. It is truly a gift, a blessing, and a wonder.

I sincerely hope that this message will touch you in a meaningful way.

An Update (Written October 3, 2016)

At the current moment, my official diagnosis remains “idiopathic”, meaning there is no “known” treatable cause.  Quite frankly, based on all the research I have done, I am not too optimistic that conventional medicine will be able to find a treatable cause at this point in time.   Nonetheless, I will continue down this road until every possible test I can take has been exhausted.   Having a concrete cause that is known and recognized by the medical community is so important, so that the underlying condition can be treated.

Shortly after my diagnosis, I wrote up the post above, which articulates a theory I have that my condition is linked with an antibiotic drug I had taken just 3 – 4 weeks before my symptoms began. I brought this theory up with a couple doctors thus far, neither of whom provided concrete feedback.   One did mention to me that the antibiotic I took was not known to have reported cases of SFN.   When he said this, I thought to myself “If a man or woman was robbed, and the robbery wasn’t reported, does that mean the robbery never occurred?”.  As I outlined in my write-up, half of SFN cases do not have a known cause, and so adverse reactions to certain kinds of antibiotics may be playing a greater role in this than is currently known or reported to/by the FDA.

With the above being said, even if I am right, it still leads to the question “And so now what?”.  I don’t think there is any treatment for such a situation, aside from trying to live as healthy of a lifestyle as possible, while doing a lot of praying to be healed.   I can feel the symptoms progressing, and so can only hope as I try to find a way.  I know of no silver bullets for this, though will continue searching.

I have seen many conventional doctors as well as 3 neurologists so far. I have received little hope at this point, other than the prospect of using pain medications that mask the symptoms – which I desperately want to avoid due to side effects and their addictive qualities.  And so, I am also trying the alternative medicine route.

Recently, I have been consulting with a naturopathic doctor.  She theorizes that my condition may be due to an infection or a series of co-infections for various common illnesses.  She ran various blood tests for some common conditions, and speculated based on the antibody counts that this may be the case. Being skeptical, I took the blood tests and analysis to a doctor who has both experience with conventional and naturopathic medicine. She told me that conventional medicine would deem the test results to be meaningless, as I could have had an infection years ago which my body cleared but still shows antibodies for.   She told me that naturopathic medicine takes a different view of things.  She did not see the harm of the naturopathic doctors recommendations.

The naturopathic doctor setup a 5-step treatment plan for me, to help my body deal with any possible infections. It is mostly herbal and supplement-based treatments. I don’t see much of a downside to trying, and concede the possibility of her theory.  It is also possible there may be an unknown illness. I’ve read various books over the past couple months linking similar conditions – such as Chronic Fatigue Syndrome, Fibromyalgia, etc. with this sort of theory.  I hope that she is right and that her treatment plan works, though I do remain skeptical and view this as a long-shot.   I am hopeful that it might assist my body in it’s healing capability.

An additional theory that I have, is that the initial panic attack I had caused some kind of trauma, which effected my nervous system.   Since both the panic and the Small Fiber Neuropathy symptoms began at the same time, I believe this is a possibility.   Many doctors have told me that anxiety and panic attacks will not physically damage the nerves, and so this line of thinking I believe is not in line with conventional medicine.  Nonetheless, it is a possibility given the unknowns involved with medical knowledge.  The more likely scenario, however, is that the physical process of sensory nerve destruction had already began, thus making me much more prone to having feelings of panic, which eventually manifested.

And, for a concluding theory – there is the “Perfect Storm” idea.   Maybe neither of the above are fully responsible for my condition, but they all played important roles – and in combination along with some other unknown factors, produced this effect.

I still believe at this date, that the antibiotic theory is the most sensible and concrete.  It connects the time period, provides the direct underlying mechanism of impairment which produces the exact symptoms I currently have.  At the same time, I concede there could be other contributing factors.  As I explore treatment options, I keep an open mind, and hope that I will come across something effective at some point in the near future.