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??

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

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.

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

--the values are certainly below the means, but the fluctuations are so wide that when the McArthur protocols were established I do think they erred on the side of underdiagnosing, it choosing 5th and 95th percentile cutoffs as incontrovertible evidence of small fiber damage.


I haven't seen much distinction in the studies as regards males/females--the original enumeration of 'normal' subjects included both in roughly equal numbers.

The search for a cause of this may be long and expensive--and a lot of these small fiber syndromes remain stubbornly idiopathic. Often, toxic, autoimmune, or glucose dysregulation mechanisms are considered possible etiologies, but are hard to prove.

What other kinds of testing have you had? And have you seen the Liza Jane spreadsheets (which were developed to be about as comprehensive a lists of tests for neurological symptoms that the good minds here could think of)?--

www.lizajane.org

glen - Lets see i have had:

1. Complete blood work (like 3 pages of it)
2. MRIs of brain, cervical spine, lumbar spine, and neck (both spine with/without contrast)
3. EMG/NCS 2X (the first time showed weakness on my left side (slight) but it was gone for the second which was like 2 months later)
4. Visual evoked potential test - they noted this as bordeline normal
5. QSART - abnormal - NO sweat production AT ALL at the thigh (left side)
6. Skin biopsy


I think this covers it...so 2 almost abnormal, 1 aborrmal, and the biopsy which i still dont know what catergory it falls in...

I had not seen this before (liz jane) but i will look at it for sure

Thanks

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?

--has been compromised by the latest cervical spine problems that I've been experiencing, inasmuch as my current symptoms are likely from nerve root compression that has overlaid my initial small-fiber symptoms. One aspect of this that is confirmatory, by both manual muscle testing and NCV/EMG, is that there has been slight de-enervation, mostly right sided (where the MRI's show the greater foraminal narrowing) along the C6/C7 myotomes and some corresponding slight muscular weakness.

This is in addition to the very typical pain and tightness in the medial scapular region (again more right than left), very much a hallmark of that kind of C6/C7 radiculopathy. I do have some weird symptoms, such as some facial hyperesthesia/allodynia, and some "stabbing" spots in the lower chest, which may be a reflection of the small-fiber neuropathy overlaid with the cervical spine problems (some neurologists do say chest can be part of the lower cervical dermatomes).

I've been doing intensive physical therapy to stave off fusion surgery and have had some intermittent improvement--but then I tend to spoil it all by keyboarding and driving, but those are needed for work. I may have to give in to surgery eventually, as the MRI's show major bone spurring (oesteophytes), and unlike herniated discs which sometimes heal, bone spurs just grow and narrow the foraminal openings. But I'd like to put off surgery until after my son starts college (a month away) and until after the major standardized tests of the Fall (two months or so away--I do test prep and tutoring for a living, and schedule is heavy now).