New Tests Raise More Questions

[sandymbme]

So I have just returned from a three day trip to Cleveland for some infusion therapy to try to get the migraine (that I have had for the last two weeks this time around) under control. While there, my doc postulated that I may have "small fiber neuropathy" and ordered a QSART and a skin biopsy. Doc said if he's right it could change the whole ballgame. Was just wondering if any one could shed any light on the tests, or on the possible dx.....Thanks!

[Sunfish]

hi sandy -

i'm not sure what you doc meant when s/he said small fiber neuropathy would "change the whole ballgame" as many of us on the forum - with a wide range of symptoms, disability, etc - have documented neuropathy, have had the QSART test (sometimes referred to as a sweat test...one of 2 types). many people ask about terminology & i think i've offered explanations on the forum before (likely more clearly than this one will be as i'm half asleep!) but to start with, autonomic neuropathy is one sub-type of small fiber neuropathy so when someone references small fiber neuropathy it may or may not mean autonomic (though often does) but when someone says autonomic is always means small fiber. that said, a diagnosis of small fiber neuropathy doesn't - in & of itself - have significant meaning for treatment, prognosis, etc. a diagnosis of "small fiber neuropathy" isn't in conflict with a diagnosis of POTS, NCS/ NMH, Autonomic Failure, etc. but rather offers a bit better defined etiology, or "why" behind the diagnosis. in other words knowing you have neuropathy can help to explain - at least on one level - the "why" behind one's dysautonomia symptoms.

it's certainly true that - in some cases - neuropathy can have additional meaning, be a part of other diagnoses, etc, but "just" having small fiber neuropathy doesn't always mean anything different than "just" having POTS, NCS/NMH, Autonomic Failure, etc. i would be very curious to know how the doc you saw thinks otherwise as my understanding is based on reading as well as consults/ discussions with many autonomic docs throughout the country (grubb, khurana, & several at cleveland clinic & vanderbilt.) i would be curious to know who you saw at the clinic as i've seen several different docs there over the years (& currently treated by a few); if you'd rather PM me (particularly if you had a mixed experience) feel free.

i have extensive small fiber neuropathy myself that is progressive & essentially responsible for my multi-system/ progressive autonomic failure but the severity of my illness is NOT because of my small fiber neuropathy diagnosis. others on the forum with neuropathy have every "degree" of dysautonomia (for lack of a better way to put it) and among these people some get better with time while some get worse (with many staying the same whilst having lots of ups & downs along the way). in short, my understanding is that those with various dysautonomias who have a neuropathy diagnosis don't have a drastically different overall profile than those without. it is probably true that those with neuropathy tend to have more sensory issues (aka pins & needles, numbness, etc) but that could just as well be a cause for diagnosis rather than an effect (i.e. the symptoms led to the neuropathy diagnosis rather than the diagnosis coming before the symptoms.)

i do know that when i was first diagnosed with neuropathy i in some ways appreciated the concreteness of a tangible "why" behind my symptoms (knowing that my nerves weren't functioning properly).

i don't trust that i've explained in the way that i intended but will close for now & follow-up later if i've confused you more than helped!

melissa

p.s. i had a skin biopsy in the midst of testing for mitochondrial disease at cleveland clinic (done under arm pit) & have had several other skin biopsies over the years for other reasons elsewhere. they're not too bad...pretty much just like a BIG pinch! and a bit sore afterward.

the direct link to info re: the QSART at cleveland clinic is here http://my.clevelandclinic.org/services/qua...s_overview.aspx. i actually had the QSART done there myself & the description is just as good as what i'd ramble on about. it's not fun but also not bad in the realm of tests; pretty much like getting stung by a few bees? the worst part for me was having to be off of some of my meds (though not all...i was allowed to take some that i couldn't take for other testing over the years).

[sandymbme]

I think the doc (who is a headache and facial pain specialist at the Clinic) meant is that it would change everything as far as treating my headaches.( I think ) I already had the qsart and I think your description of being stung by bees is quite accurate! I wasn't taken off any meds because they decided to do the test while I was already there for other treatment, hope that doesn't wreck my results....

I was kind of hoping this would give me some insight into my biggest question, which is, am I going to keep getting sicker? I have now been dealing with the pots-related stuff for a year and more and more and more keeps going wrong with my body. I just want to know if this is going to continue because we keep putting things off "until I feel better". If that is not going to happen I'd like to know so we can try to do some things (trips, etc.) while I am still somewhat, kind of mobile.

I have had only positive experiences with this doc, but I didn't actually have an office visit with him. Just saw him briefly in passing. My appt. this trip was actually with his nurse practitioner, who is also very kind. But she generally doesn't do a whole lot without consulting with the doctor first. I am supposed to go back and see the doc after I get all my results.

Thank you for your insight!