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.

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 – 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!

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!

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.

Update – April 30, 2017

For the month of April, I’ve had some more tests, but little new information.

Earlier this month, I was tested by my neurologist for the SCN9A, SNC10A, and SCN11A genes, which he said can be a cause for SFN.   These came in negative.

I also took an autonomic nerve test, which I am still awaiting the results on.

The next big event for me will be my trip to the Mayo Clinic at the end of May.

With that said, my pain levels have varied, though at times the intensity of the “electric shock” sensations has really kicked up during some of the episodes, to the point where it made me consider the possibility of using gabapentin.   However, I have always resisted this urge, despite the barbarity of such moments. I’m always afraid of the unintended consequences of pharmaceuticals. And I don’t want to go down a rabbit hole where there is ambiguity about what symptoms are being caused by the condition versus what are side effects of medications.  Nonetheless, I do know that if pain conditions are severe enough in intensity and duration, every person is going to have a point where they are going to need to seek relief.

With that in mind, I had the following thought / observation on the subject of pain, which I think makes a great deal of sense:

During moments when my symptoms seem to be either new, or worstened in intensity, I imagine back to how I felt a year ago. I remember specifically late one evening last year, when I felt like my body was on fire.  It was the first time I had felt this new sensation on this level of intensity. For a couple hours I was truly panicked by this, rubbing ice packs all over myself, wondering how on earth I would be able to indefinitely deal with this.   And it took me months of episodes, where I would feel these sensations for periods of time before the panic element would begin to wane.   Today, the same type of situation would seem a lot more tolerable to me, because I have grown more used to it.   And so, began my personal theory of “pain tolerance”, which says that if a baseline of pain exists for long enough, eventually the mind has a way to adapt and adjust to this “new normal”.

The key to this, is that the pain has to progress at a rate that doesn’t exceed the progression of tolerance.   If the rate of pain does exceed the progression of tolerance, it is going to feel like hell for a period of time, but eventually the tolerance will catch up.

Anyway, this is simply a theory that I have about my body. Each person is different, and circumstances can change.

I also realize that this idea seems to go against what I have read about neuroplasticity: Neurons that fire together, wire together. And so, pain, should create more pain, unless there is a neuroplastic intervention that rewires the circuitry. I take this into consideration too and factor that into my self-treatment regimine.   I often do visualizations when I feel pain, to try to utilize neuroplasticity.  Perhaps at some point in the future, I will be able to reconcile both ideas through my experiences, to refine my own personal theory.

I’ve also been exploring with more depth the subject of neuro-modulation. I always carry around a small handheld fan with me.   I’ll discretely set it up if I at a social outing, etc. I know I’ve written about this before, but I find having a constant pool of air blowing over me to be helpful (just as a warm shower helps).

Also, last year I had purchased a Quell unit (similar to a TENS device). I stopped using it during the winter, as it was harder to wear with my clothes outside. However, I recently started using it as I felt more intense “electric shock” sensations, and found this device to be somewhat helpful at reducing this. I’ll post a more in depth review in the future, once I have months of experience working with the device…as perhaps my limited experiences could have been coincidental or placebo effect.

In addition to this, a couple months ago I started experimenting making my own skin salves. I recently perfected my recipe, which is designed to: Have a cooling effect, reduce pain, and moisturize. I found since using this, it does help somewhat – particularly for cooling (since it has menthol in it) as well as moisturizing (as the base oils are 1/2 coconut, 1/2 olive).   There are about a dozen herbs I had researched that I added in it.  And so now I’m applying it daily.

I continue to use a diffuser. My favorite essential oil thus far is Eucalyptus. I find lavender to be good for anxiety.   I also keep a little bit of oil in a small tube with cotton, so that way if I’m outside of home and want a quick burst of treatment, it is there for me.

And last but not least, I find medicinal herb for sleep to be extremely helpful.

And so, that is it for now. Hopefully this information will be of value for those who read this.

Wishing everyone a life filled with less pain and more joy 🙂

Update – March 29, 2017

A few days ago I had an appointment with another neurologist, of whom I had waited 6 months time for.   He is the 4th neurologist I have seen thus far.   He told me there were a couple blood tests that haven’t been done, and so is having me take them. He also referred to do an autonomic nerve test in the beginning of April.   I think this is very important, so that I can understand better what is causing periods when I get dizzy.

I’m planning to go to the Mayo Clinic in a couple months time. And so, by the end of that trip, my diagnostic workup should be totally complete.   Either a treatable cause will be found for the SFN, or it won’t.

As for good news, my pain levels have been lower over the past week.   I also feel I have continued to learn the importance of distracting my nerves – the most painful periods tend to be right before I fall asleep / when I’m in a super relaxed state. The simple act of keeping a fan on or taking a warm shower really helps.    I’ve been using a medicinal herb that I have found to be extremely helpful, and it makes the nights a lot more bearable.

I’ve also been thinking, since the body has natural ways of creating its own “feel good” chemicals, I should focus heavily on that through each moment.   Focusing on activities that foster my sense of purpose, spiritual growth, empathy, humor, curiosity, appreciation, etc. all I think are helpful with this.   I plan to write more about this in the future.

Update – March 1, 2017

Today I met again with my rheumatologist. She said pretty much all the tests she can do, have been done.   She referred me to an ophthalmologist who can check for Sjogren’s, though she told me, based on my blood tests, its 99% ruled out at this point.

There appears to be consensus among the 3 neurologists I have seen, that the next step would be for me to go to the Mayo or Cleveland Clinic.   And after that, there is no more that can be done.

On the positive side, the past week has been quite good, and my pain levels have been on the low end.   I think I’m developing a good understanding of my own limitations, and what activities I am able to do without over-exerting myself. I do know the cycles seem to go in ebbs and flows, and so I’ll seek to better manage these cycles to the best of my ability.

Given the limitations of modern medicine, I’m trying to embrace more the spiritual side of healing, and am shifting this towards my primary focus.   I’ll write more about this in future entries.

Update – February 11, 2017

Today I as write this, I’m having a pretty painful day.  I’ve felt pain sensations throughout my body – but primary areas today are in the jaw, neck, as well as eyes.   Secondary areas are ears, hands/fingers, and back.    And so, my writing is going to be less positive.   However, with that said – it is important to note that yesterday my pain was low, and I’ve had both strings of good and bad days since my last post.  I welcome the periods of respite.  With that said, the condition is most definitely progressive in nature, and that aspect of it is very scary, yet I’m learning to deal with it the best way I can.

And so, here are my updates:

Last week I got the test results back from the rheumatologist.  They all came back normal.   The Sedimentation Rate (ESR) was slightly elevated and outside the reference range, but I was told its not of significance.

She said there are no other tests that she knows of that can be run at this point.

I also met with my primary neurologist, who provided me the last of the tests he ran, which came back normal.  He told me he doesn’t know of any more tests that can be run, and said unfortunately the condition remains “idiopathic”.  He was very sympathetic, saying how he realizes that the situation is unacceptable, and even apologized for this.

He told me he would give me a referral if I want to seek further opinion from the Mayo Clinic or Johns Hopkins.  He said he is not sure what other tests they would be able to do, but that they do have specialists for all sorts of rare conditions.

My plan is to consult one more time with the original neurologist who led me to the Small Fiber Neuropathy diagnosis, to get her view of things at this point.  And with whatever information she gives me, I’ll make one last appointment with the rheumatologist.  After that, it seems that the Mayo Clinic will be the last of the line in seeking an answer and treatment.

On a separate note, a few weeks ago I setup an appointment with a primary care doctor.  For the past couple years, I have not had a primary care doctor – ever since they kept diagnosing my condition as being “anxiety” I viewed it as a waste of time.  Nonetheless, my new primary doctor I found to be highly sympathetic to my situation, despite the little she could do.  She referred me to a pain psychologist, who I had one session with so far.

The pain psychologist session I think was helpful, and she gave me a bunch of papers that give mindfulness techniques, talk about brain  neuroplasticity and provide exercises to help, etc.   I’ll go through the process and see how it goes.

Nonetheless, there are disconcerting things.   The pains seem to be progressing over time, in all areas of my body.  I also get other strange symptoms, such as regular eye irritation, extreme skin sensitivity, etc.

The thing that is most difficult for me, is learning how to accept random moments of intense pain/terror, and not being traumatized by it.  Any human being with feelings and emotions would have great difficulty overcoming this.

I often feel I’m facing an oncoming freight train, with little to no answers.    I know whatever the underlying condition is that is causing the SFN, is very dangerous – but because it is unknown at this point, there is no way for modern medicine to treat it.   I hope and I pray.

I’m trying to teach myself to accept whatever will be, and to do my best to live in a state of prayer and empathy towards others.   When I feel pain, I attempt to focus on empathy, and am trying to make each moment count in the best way I can.