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.

Update – September 29, 2017

Since my last post, I have not seen any doctors. I am planning to have a final consultation with the neurologist I most trust next week.

With that said, I continue to feel nerve pains on an on-and-off basis. It can be quite intense at times, but at the same time, it comes-and goes, moment by moment. I do have moments where I feel complete fine, and others that are less so. It does not affect my ability to physically do things, and for that I am very grateful. People I interact with would never know I have a problem unless I told them. Nonetheless, it can be challenging to deal with, and so my mental strength has been building with time.

The worst is always when I’m trying to sleep, or when my body is getting into a relaxed state. I tend to feel nerve firings most in this circumstance. At the same time, I feel my mind has, in some way, adapted to the situation – and it interferes with my sleep a lot less so now, despite feeling the nerve firings going into sleep. My pain tolerance threshold seems to have increased quite a bit with time.

I do get regular nerve sensations that fire in the area of my heart. I think a year ago, this would cause me the most amount of worry, as it can feel very ominous. I’ve been told by multiple neurologists that this is a purely a sensory sensation. While I still feel this today – perhaps more regularly and perhaps with some more intensity, at the same time my mind is quite at peace with it. And every time my nerves fire in this manner, I try to further the process of my mind becoming peaceful with this situation.

Another symptom which is somewhat more prevalent, is that sometimes if I scratch my skin, I can feel the scratch linger for many minutes afterwards.

While overall I feel my anxiety levels are as low as they have been in a while (albeit, this fluctuates), dealing with the constant overhang of this nerve problem is one that I simply will have to continue to learn to live with and adapt to, to the best of my ability. I do various mental exercises to help to evolve my perception of pain. And, every day / block of time I get through, where the symptoms are moderately low or minimal, I celebrate as a tremendous success.

And so that is it for now. Wishing everyone a low (and hopefully no) pain day!

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!

Mayo Clinic Trip Update – July, 2017

This week I had my follow up visit at the Mayo Clinic.   I have to say, the end of my visit left me more confused than ever, and this trip was definitely not what I had expected it to be.   I feel it is important to write about this, as often patients will find themselves in a maze of contradictions and conflicting information. 

To provide a little context before delving into what happened, a couple weeks ago I received back the results from the paraneoplastic panel.   It all came in normal, except for the test for  “AChR Ganglionic Neuronal Ab, S”, which came in at 0.03 nmol/L.   The reference range is <=0.02, and so this came in just above it.   In the lab notes, it said that “The positive predictive value for an autoimmune neurological diagnosis (diverse phenotypes) among patients with an alpha-3 ganglionic AChR antibody value of 0.03 – 0.09 nM is 46%.”  It went on to say “The positive predictive value for a cancer diagnosis (diverse types) among patients positive for alpha-3 ganglionic AChR antibody is 30%, approximately 24% are historical neoplasms and 6% are detected prospectively”.

When I read this test result, I thought to myself that this was definitely something that appeared to be concrete.  If it is autoimmune, it might open the door to therapies such as IVIG.   And while I feared a cancer diagnosis, at the same time I thought to myself  “It would likely still be in the early stages, and with treatment, the SFN could be reversed.”

When I spoke with the doctor, he told me that based on their research, the antibody count would have to be much greater – if I recall correctly, above 0.1 nM, before it would create a statistical indicator of being autoimmune or cancer related.   He said that my case, though testing positive, was borderline, and therefore in his opinion not a significant risk.   Nonetheless, he said that when I get home, I could take a PET scan to rule out cancer in order to put my mind at ease.    He also said he sees no evidence of any autoimmune cause.

It is interesting that there seems to be a contradiction between what he told me, and what is stated in the lab notes.  Being that they should all be based off the same research, I am not sure why such a contradiction exists.  To speculate, it is possible that the lab notes are taken off old research, and his research is based off newer information.  Nonetheless, with this contradiction, I’ll opt to take the safer route, and look into doing a PET scan sometime in the near future.

On a separate matter, I also did the TST (autonomic sweat test) that had been scheduled, which the doctor had told me came out normal.  They also had me do another punch nerve biopsy, which he said would take another month to get the results back.

He then went on to tell me how he thinks the Therapath biopsy I did last year may not be accurate.  I was rather taken aback by this, since I have showed it to so many different neurologists,  and doctors over the past year.  No one had questioned it, and is until now the one area of complete consensus.  It is the basis of my SFN diagnosis.   He said that “commercial tests” are sometimes not accurate, but did not elaborate further.

I asked him, if such was the case, during my previous trip to Mayo, why I was told that the sweat gland test I had taken was a confirmation of the SFN diagnosis.   He looked up the test, and said that while it did test positive, it was borderline.  He went on to tell me that the TST test I just did overrode the previous test’s results, and that it came back normal.

He went on to say medically there doesn’t seem to be any problem, and basically said that the symptoms I have been experiencing are psychological in nature.

I found myself laughing inside at the absurdity of this.  I’ve been through this sort of thing many times prior to my SFN diagnosis.   I found it curious, however, that he would voice this conclusion before getting in the results for the new biopsy.  I just replied saying “Well, we will see how the results for the new biopsy comes out”.

We talked some more, and it was concluded that even if the new skin biopsy reaffirms the SFN diagnosis, there is nothing that can be done about it.  And so, my situation remains unchanged.

My course of action is to look into the PET scan, and await the results on the new nerve biopsy.

After these things are complete, assuming I don’t have cancer, and regardless of what the biopsy results state – I think I am done with seeing doctors at this point.   I might still touch base with my Skype neurologist every 6 months or so, but that’s about it.   Enough is enough 🙂

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

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!

Physical versus Psychological Anxiety

One symptom that I had, long before my official diagnosis of small fiber neuropathy (but coinciding with the beginning of the “parethesias” I felt), was the constant feeling of being “on edge”. It would feel like adrenaline was flowing from within my body, for no apparent reason.   This symptom came out of the blue, after my first panic attack (along with the symptoms of SFN) back in 2014, and would manifest regularly – without explanation.

This had been lumped in as part of having an anxiety disorder, with psychological underpinnings at its root.  Yet, it always mystified me why this was happening, as it was not something I had felt before. I can now see clearly that this particular symptom I was feeling was a physical process happening within me, and had little, if anything to do with psychology…but it had (has) everything to do with basic physiology.

My worst periods of SFN sensations come at night. I’ve noticed more recently, that sometimes when I am awaken by the pains at night, I can feel this adrenaline flow through my body at the same time.   It is as though my body has its own innate intelligence, and knows to release adrenaline when it’s being attacked, even if I am not consciously aware of what is occurring.   And so, whatever it is that is attacking my nerves (likely, the immune system gone amuk), my body has its way of conveying anxiousness – an alarm siren, well before I knew about SFN, and well before the symptoms progressed to its current point.   Today, I can often feel the physical sensations coincide with this adrenaline flow.

I feel it is very important to write about this, because too frequently misdiagnosis occur because the idea of a physical underpinning to what is happening in the body is discounted. Often, during the couple years prior to my diagnosis, I’d have Doctors discount a physical problem within a few minutes of speaking with me. Yet, it is critical for the well being of people who have such an issue to be aware of it.   Though the problem can’t easily be remedied in many situations, understanding the mechanics of what is occurring helps to better psychologically cope, and can help to prevent a negative feedback-loop of ever-escalating psychological anxiousness due to both an unknown and unacknowledged physiological problem.

Update – May 22, 2017

Last week I got back the Autonomic Nervous System test.   Everything came in classified as “normal”, except for the “Head up Tilt” test under Vasomotor Function, which said underneath the results “This almost but not quite meets criteria for postural tachycardia”, and is classified as “No definite abnormality”.

I am unsure what the phrase “almost but not quite” means.   And I am wondering if this result could provide an alternative explanation for the bouts of dizziness I sometimes experience, in lieu of “anxiety”.

Unfortunately I wasn’t able to speak with the doctor, and appointments are typically booked out far in advanced.

I’ll be at the Mayo Clinic in one week’s time, and so will ask them about this when I am there.

The next few weeks ought to be enlightening with regards to this whole situation.   On Wednesday I have an Opthalmologist appointment to rule out Sjogrens, and on Friday I plan to fly out to the Mayo Clinic.

Quite honestly, I have very low expectations that these will yield any new information, as I have already had so many tests done.  However, one never knows…

Symptom wise I feel that the flares have gotten worse in their intensity. However – at the same time, tolerance builds, I also do have moments where I feel nearly completely fine, which I am very grateful for.   Keeping myself distracted is very important, as is resting when necessary.

My mind shifts from optimism and hope, to occasional despair if I’m in the middle of a pain flare, and then back to optimism again once the pain disappears.   It is kind of strange, as sometimes a pain cycle can last for a few hours, or for a brief – highly intense moment, and then suddenly change.   It is difficult to predict…like the ebb and flow of a lightening storm.  Regardless of this, I feel I am heading in the right direction.