Orthostatic Tremor anyone?

[anita]

Although many with SS get 'heightened' awareness of pain, it is likely 50/50% on those with fibro vs SFN.  I would bet most have skin biopsies, and those with negative biopsies, are probably told it is fibro, where positive biopsies get the SFN Dx.  If I remember, your biopsy only tested one site and was inconclusive.  They Dxd SFN clinically, as you reported.  The % of fibers was in normal range and they didn't do morphology testing or autonomic testing.  This is why I think you should have it repeated.  Not only to gauge changes/progression, but to confirm/deny the SFN with at least 2 sites (only way to determine if length or non-length SFN).  I say this because, your high level of numbness and wide spread pain is consistent with non-length SFN...but 2 sites are needed to be biopsies to confirm this type of SFN. 

I too have 'patches' of numbness...and I also have one whole knee surface that is numb...and an entire thumb.  Places on my face is numb to the touch as well.  Various other areas, but they are smaller patches and not as noticeable.

Allodynia is a common fibro (and SFN) condition where the surface on skin is super sensitive with pain.  It can be confusing to some which they are experiencing. 

Hopefully the new neuro will be more assertive with your case.  I'm SO glad you are getting to see someone else!!  Let's hope they repeat skin biopsy and determine if yours is, in fact, the non-length SFN...which would explain the face, and other areas other than stocking/glove distribution of arms/legs.  Let's keep fingers crossed that you get in before Nov!!  WOW, you made my day, with news of new neuro!!