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:


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.

Don’t worry, its just anxiety…

Don't worry its just anxiety

I recently had this cartoon made, as it expresses the frustration I have felt many times prior to my Small Fiber Neuropathy diagnosis.

Too often, the pains that patients feel are either discounted or ignored, as tests for various diseases and conditions all come back being normal.   Many doctors seem to have little awareness of SFN, and so a proper diagnosis can take years.

I am sure that others who have gone through this can relate.  And if you are currently going through such an ordeal, please know that you are not alone.

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.

The Power of Ice

A few years ago I was in a dentist office, having x-rays done.  I kept gagging whenever the hygienist put the tags in my mouth.  After a few failed attempts, the hygienist told me to focus on my toes.  And so I did.  Amazingly, my gag reflex had subsided.    Such is the power of focus and attention.

When we feel some sort of pain or discomfort, it seems natural for the mind to dwell on that until a solution is found.  In the case of the x-ray, the solution was gagging until I forced the tags – the source of my discomfort –  out of my mouth.

By shifting my attention away from the focal point of pain, the hygienist had been quite effective at reducing the pain enough to allow the procedure to be done.

I noticed a similar technique can be helpful for managing the pains of Small Fiber Neuropathy, when they are on a more moderate pain-scale level.   If I feel burning pains or other painful sensations, simply putting my hand on an icepack seems to help in some measurable way.   This seems to help, regardless of wherever the pain exists in my body.   My mind’s focus shifts to the focal point of the icy cold sensation my hand feels, rather than the burning or pain that my body feels.  I have found this helps make the experience more bearable.  

Remaining Composed When Your Brain Is On Fire

Last week I attended a lecture series at a local university.   They showed a film, and then afterwards there was a panel of professors, to which the attendees could ask questions.

During the film I could feel sharp sensations pulsing through my left hand.  At times it felt intensely painful. I felt like screaming.   The pain caused my anxiety to shoot up as well. Instinctively I wanted to leave.   Yet I told myself “Don’t worry, you have been through this before.  You will get over it.” I took out an ice pack from my bag, which helped a bit.  Despite the pain and anxiety, I continued to watch the movie, and actually learned a lot from it.

At the end, I ended up asking the panel of professors a question.   It took them a while to respond, and in the middle of the response, I felt this sensation in my head as though my brain had been suddenly lit on fire.    It was highly disconcerting to say the least.   I wanted to scream.   But if I did scream, I knew there was not another soul in the room who would understand my situation.  I had the urge to run out of the room.   But again, I knew the drill, and knew I would pass through it.  And I did.

Amazingly, through this process, I was still able to pay pretty good attention to the response of the professors.  I felt that I had learned a lot that evening, despite my condition.  However, for the rest of the night, after I got home, I continued to experience both a lot of pain, burning sensations, and anxiety.When in public, I feel that I have mastered the art of concealing my condition to others.  However, inside I feel it is taking a toll on me each time this sort of thing happens.  It also causes me to feel a great sense of isolation at times, as I feel the need to put on an act and conceal how I am truly feeling inside.

Luckily, not every moment is like this for me, and I have times when I can truly appreciate the moment without feeling a large amount of pain.   It is my hope and prayer that my condition can be reversed, so that I may be free of these sensations and enjoy each little great moment of life.