--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

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.

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!