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!