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Old 08-13-2018, 08:58 PM
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en bloc en bloc is offline
Senior Member
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Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
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Quote:
Originally Posted by MAT52 View Post
Thanks. I'm all too aware of this mild dysautonomia having been told by my neurologist that I probably have what she calls "mild ganglionopathy" - a form of autonomic dysfunction associated with my confirmed Sjögren's Syndrome (i.e. not idiopathic) alongside presumed SFN. I have GI problems at both ends and don't sweat appropriately, suffer sexual disfunction and cranial neuropathy - and have disequillbrium and tinnitus - all apparently caused by proprioceptin issues as part of the presumed SFN and Ganglionopathy of my diagnostically confirmed Sjögren's. An audiologist and opthamologist have both recently confirmed that my issues are most probably neurological as part of my rheumatic disease.

So the thing I'm really asking about is whether this sometimes includes a vasospastic process, if a person has colour and skin density changes in their digits and extremities - such as I have and ElaineD has described? And does this come under the heading of secondary Raynauds Phenomenon or not? Or is a different clinical process involved in causing these colour changes as part of SFN to the process involved in secondary Raynauds Phenomenon to advanced SFN? I'm aware that both can lead to ulcerations and loss of digits/ gangrene at their most severe - so what is the difference, if any, between these two conditions?

I'm still very confused about this and am being assessed for possible Scleroderma so it is important to me that I get to the bottom of this I feel. My sense is telling me, after these replies, that my problems are neuropathic and autonomic but this has not yet been histologically or physiologically confirmed. The first rheumatologist thought SFN but skin biopsy did not confirm. Then my GP and an eminent rheumatology professor told me three years ago that t was secondary Raynauds rather than peripheral neuropathy.

Now a second neurologist is saying it's SFN with gangliopathy, but says tests are not available where I live and anyway aren't necessary because my description and Sjögren's diagnosis are enough to go by. They aren't enough for me though - I like hard evidence rather than presumed diagnoses!

And I'm still none the wiser I admit but I worry most about atherosclerosis/ PAD as a third alternative possibility because of my family history.
Push for the "hard evidence" and get PAD testing (this should definitely be available...as basic testing just includes special BP readings in legs/arms)...and get the skin biopsy to confirm the SFN...and confirm any autonomic damage as well.
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