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Old 01-22-2013, 08:30 AM #1
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On the website it says : "in sensory neuronopathies or multifocal neuropathies, it (ENFD) may be preferentially reduced proximally at the thigh ". Does this match my results (the thigh number is higher but more reduced based on the norms). Also I sent some questions to the lab about y age and the affects on the results including a question about the morphology of the fibers because it was not included in teh report.

Glenntaj - you said that my values were still low...do you have any idea what a normal range for these areas (thigh and calf) are? also when you say that the SGNFD could "indicate small-fiber autonomic neuropathy" do you think that it could also indicate purely SFN?
thank you so much
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Old 01-22-2013, 10:59 AM #2
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[Boiler Im sorry I havent got back with you--- I know Glenn is much more versed then me ---all i know I was postive and since that time I have had -- my neck and cancer-- this issues took a back seat and so did my memory(lol) about what the % mean. I hope Glenn or someone here can get you the info u need . I tried to find my orginal path report this weekend so far cant locate it to compare.
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Old 01-22-2013, 12:38 PM #3
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mg - any thoughts on the numbers?
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Old 01-22-2013, 01:20 PM #4
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Quote:
Originally Posted by boiler1993 View Post
mg - any thoughts on the numbers?
Here is just my thought and I could be wrong but I have a little more background of you-- then others -- now your qsart test for sweat came back abnormal and with your previous symptoms like heart racing and you rest pulse being high to me indicates a form of neuropathy even if its not sfn its does seem automonic neuropathy ---example damage to the nerve that supply the blood would effect blood pressure and body temp...i forgot does ur blood pressure change via sitting or standing?--- I also remember u had a problem at movies --with your resting heart rate 2. I know u execise do u get any unusal shortness of breath when you do ? You heart rythms can be faster or slower with this too. Hopefully --Glenn chimes into to help me here a bit. Have u been lossing any weight without trying. What does you DR say??
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Old 01-22-2013, 04:40 PM #5
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mg/glen - I am not sure about blood pressure change upon standing - i havent had autonomic testing. No I dont get any shortness of breath when exercising and I am not sure about heart patterns but when I have taken heart rate it is about the same as everyone else (i am on a team). And no i havent been losing weight. My dr is supposed to call sometime...they gave him my free times through thurs so I should have talked to him by then. Could autonomic problems be causig the sensory pain? (it does happen when I am hot but i didnt think that was an autonomic symptom). thanks
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Old 01-23-2013, 07:49 AM #6
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Default A few clairifications.

Many neuropathies, but not all, are "length dependent"--that is, the damage or "die-back" starts first at the nerve endings that are farthest from the seat of circulation and then progressively (though often slowly) continue towards more proximal regions of the body (as opposed to "distal", which describes toes, feet, fingertips). Part of the reason that the skin biopsies are taken from near the foot and the thigh is to see if this common distal/proximal gradient is going on (it is very common in toxic, metabolic, an ischemic--processes that damage blood vessels--neuropathies).

You don't seem to have this, though, which is why neuronopathy was mentioned. This is slightly different, and not length dependent, as the damage seems to occur in the dorsal root ganglia--at the level of the cell body, not the axonal (fiber) endings. There are a number of different processes that can result in a neuronopathy, many of them autoimmune, though there are many idiopathic cases as well:

http://neuromuscular.wustl.edu/antibody/sneuron.html

These are primarily sensory, though some of the conditions that come with them have autonomic components as well, as small fibers do control autonomic functions.

By the way, here are the figures from my skin biopsy reports regarding the McArthur protocol norm determinations for nerve fiber density at calf and thigh:

Mean: +/- 1 standard deviation: Range: 5th percentile:

21.1 +/-10.4 2.9--57.5 5.2 (Thigh)

13.8 +/-5.6 0.6--32.2 3.8 (Leg)

These figures are expressed as number of distinct fibers per millimeter of skin, and are normed for males 40-49 (which I was at the time); I'll research it by I believe the figures for younger males are a bit higher, but not much.

My initial report not only showed figures below the fifth percentile, but also noted "excessive branching and swelling, consistent with a small fiber neuropathy". I did not have any autonomic symptoms--just very severe small fiber nerve pain body-wide (that came on acutely--in hours). My last biopsy--the good thing about them is they can be done repeatedly for comparison--showed me up to about 16th and 18th percentile at leg and thigh, respectively--I have gotten re-enervation and this corresponds to the reduction of symptoms. (I'm due for another one soon.) However, the problem is we have no idea how this compared to my nerve fiber density before my acute onset on April 11 2003.

Many small fiber neuropathies do have some autonomic involvement as part of the package, although sensory nerves may be affected more than autonomic ones (and vice versa); often the autonomic effect is slight or "sub-clinical" and only noticed with very exact measurements/testing:

http://neuromuscular.wustl.edu/sensory-small.html

http://neuromuscular.wustl.edu/senso...tml#idiopathic

I suspect you are experiencing some sort of small-fiber syndromes with both sensory and autonomic features, and it may not be length-dependent. But as you can see, this is not uncommon, unfortunately.
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Old 01-23-2013, 08:02 AM #7
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Glen- just so you know (if you are able to find nerve data) I am 19 years old and female. Also maybe I am misreading this data but if the means are 21.1 and 13.8 AND my values fall outsied of one standard deviation...isnt this considered low (even though I am above the 5th percentile)? I mean my values are significantly lower than the mean of both...and according to therapath, if anything my value norms should be higher...wow there are lot of things which can cause these symptoms this one caught my eye though " Sensory Neuronopathy: Small fiber" because it is like the first one that includes my age in onset range.. any way thank you again hopefully i will hear from my doc or/and the lab today
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Old 07-31-2016, 09:45 PM #8
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Quote:
Originally Posted by glenntaj View Post
My initial report not only showed figures below the fifth percentile, but also noted "excessive branching and swelling, consistent with a small fiber neuropathy". I did not have any autonomic symptoms--just very severe small fiber nerve pain body-wide (that came on acutely--in hours). My last biopsy--the good thing about them is they can be done repeatedly for comparison--showed me up to about 16th and 18th percentile at leg and thigh, respectively--I have gotten re-enervation and this corresponds to the reduction of symptoms. (I'm due for another one soon.) However, the problem is we have no idea how this compared to my nerve fiber density before my acute onset on April 11 2003.
Many thanks for the data and links - but most especially for your report of improvement in ENFD! This gives me hope! Thank you!

Can I ask how you are doing now? Have you had any follow on biopsies and would you care to share the results?
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