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Old 01-24-2013, 08:28 AM #11
boiler1993 boiler1993 is offline
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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
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Old 01-25-2013, 08:05 AM #12
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All medical testing is at best only an estimate. Example: There are people with severe lupus or other autoimmune disease, who show up in testing with normal ANAs, at times.

There are people with no obvious autoimmune issues, who will test positive for ANA, at times.

Medical testing is only a snapshot in time. The body changes, goes thru cycles, and even people with the same disorder, can have very different test results for it.

The statistical ranges are estimates. People are chosen who have no symptoms of a disorder, typically. But they are all different genetically from each other. Some may have smoldering issues, not yet identified.

Good doctors know this, and retest after a time period, and perhaps even again, later. Labs make mistakes, people make mistakes.

So testing is just a tool. An imperfect one at that.
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Old 01-25-2013, 01:58 PM #13
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Hi everyone.

thank you so much for all the advice I just talked to my doctor and he pretty much says that this test didnt help him in diagnosis at all except that he def. thinks there is nerve overactivity of some kind. He pretty much says that we are just going to medicate teh symptoms and forget the cause right now. So I am going to start gabapentin and am already on pyridostigmine (for heart). Wish I had a real answer but guess thats not how this works. He just said that it could be suggestive of a SFN but no real answers

Thanks so much!
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Old 07-31-2016, 09:45 PM #14
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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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Old 08-02-2016, 06:09 AM #15
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Default My every several years skin biopsy protocol--

--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).
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