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Old 07-30-2018, 10:26 AM
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
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Quote:
Originally Posted by en bloc View Post
Yet another reason to ask for the repeat skin biopsy...I know you're likely tired of hearing me say this...LOL The first was not conclusive, not handled/transported properly (according to you), and they only did ONE site and NO morphology. There is NO way to determine length or non-length dependent SFN unless they test more then one site. Your wide-spread symptoms would point more toward non-length dependent, but then again, they will never know because they one tested one place. And, as in my case, it wasn't so much the nerve density that was initially the problem (but later density dropped), but the condition of the fibers itself. This is where the morphology comes into play and is so important. You could have damaged, swollen, segmented, etc., fibers...even with a normal density %.

So ask them to do another skin biopsy. As Glenn said, the EMG/NCS CANNOT tell you anything about SFN. But you can have more then one problem.
Yes I reckoned you’d have something pertinent to say about the lack of skin biopsy evidence in this context! And I fully agree although I feel that, by stalling on this for years now, they may not be keen to perform this in my hospital’s neurology department. But I’m only seeing a registrar initially (is this what you call an intern perhaps?) ie someone not yet actually fully qualified to do more than pave the way for the specialist. But perhaps this will at last include the official SFN testing at last?

Then the neurologist will probably see me herself (I think I’ve got another woman neuro - hopefully less sarcastic and more up to scratch on Sjögren’s SFN) in a few more months with results of tests. The ever growing cynic in me says that this is just the NHS hospital buying time so that they can say it’s all damage done and no point in treating my SFN as it’s gone as far as it’s likely to - bearing in mind that I’m fairly numb everywhere now.

It also occurs to me that, if nothing shows up again with skin biopsies, then it’s likely that they will discharge me with Functional Neurological Disorder or Fibromyalgia secondary to my SS - which is a daunting prospect I admit. X
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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