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!

5 thoughts on “Mayo Clinic Trip Update – June, 2017”

  1. Hi Paul!
    Although limited in understanding the cause of the SFN I am sure that the Mayo Clinic is an excellent place for you to have a most up-to-date assessment possible in the specialty of neurology. Unfortunately this as other specialties tend to look at autoimmunity still in a partial way. Looking at the tissue involvement that the specialty is dealing with and not looking at the connections. That every time I personally see it is linked to immune-inflammatory dysfunction in the gut.
    But of course there are mechanisms in the production of the lesion at the level of the nerve endings have to be better elucidated and treated and I believe that the ARA290 is a response to this.
    I was wondering what you have in this “special topical cream”. To be prescribed at the Mayo Clinic there must be validity and no longer a placebo. I would be amazed if this cream were the basis of XIB4035 whose tests have been done in Boston. This substance is able to draw the nerve fibers to grow again.

  2. Hi Helio,

    The topical prescribed I don’t think is meant to reverse SFN, but rather to deal with the pain.

    According to the label, It contains 2% Amitriptyline, 5% Ketamine, and 5% lidocaine – vanicream.

    I found this interesting study at:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3401865/

    I’ve only used a really small amount of it, due to my fears of side effects, though they said this shouldn’t be much of an issue. I’ll probably experiment with it a little bit more though prior to my next appointment at Mayo.

    Thank you for sharing the info about XIB4035, I’ll have to read up on that as well! Also thank you for sharing the info on “leaky gut”, I’ll have to read up more on that.

    Also, how did your hyperbaric oxygen therapy sessions go so far?

  3. Based on one article, my trusted pharmacist formulated with 10% pure amitriptyline. Did not work. I also tried a time ago with ambroxol formulation for another article I researched. This second formulation showed results, but not very significant. I will put here the link on this use of the topical ambroxol in neuropathic pain> https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4701773/

    Concerning ambroxol, I also tested oral use according to article https://www.ncbi.nlm.nih.gov/pubmed/28466418. Fibromyalgia is understood by many authors as a form of small fiber neuropathy. I used it at a time of crisis and it seemed to improve looking like a good option since it is a safe substance and low profile side effects.

    This Ketamine + lidocaine combination really seems to be helpful. Hopefully you are seeing effect of this formula.

    About XIB4035, https://vector.childrenshospital.org/2014/01/a-skin-cream-for-peripheral-neuropathy-small-molecule-may-go-a-long-way/

    Still do not seek treatment with hyperbaric medicine, although the burning in the first part of the feet persists I have not had acute crises. I am studying therapeutic resources for “leak gut.” Intake control of immunogenic proteins has had excellent results.

    1. Thank you for adding the links. Yes, you may wish to look into trying the formula that Mayo had given me. Perhaps it might be helpful for you.

      Also thank you for sharing the info on XIB4035, that also looks very promising – particularly for people with length-dependent SFN, as they may be able to target the hands and feet. As for non-length dependent SFN, not sure how feasible it would be for someone to cover their entire body with that topical, but it is nice they can cover areas of particular concern.

      It is always hopeful to learn that these new medications can help to restore nerve functioning.

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