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Old 06-21-2015, 10:17 PM #1
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
Ooo Sense of closing down - autonomic neuropathy

Lying here in the early hours (Scotland) contemplating mortality

I don't really know where this thing will lead but it is scaring me a lot now. It isn't just the burning pain in my peripheries - which is less severe tonight than it will be again tomorrow night when I drop back down to 10mg of Prednisolone. It's the other autonomic stuff that scares me most. And none of this has yet been confirmed by any nerve conduction, MRI, blood or lumbar puncture or skin biopsy tests either.

Having not sweated appropriately ie after strenuous activity for over a year now I've suddenly started having these sweats which come from nowhere. They could be hormone related but I don't think so because I amthrough my menopause and out the other side having suffered no hot flashes or sweats at all during the change years.

I have this vestibular thing going on where my spatial awareness has changed so I feel I'm going to fall often and I'm always bumping into objects and people, struggle to walk straight ahead if the lighting changes and find going downhill very hard. I have lost my sense of smell entirely.

My face is always numb and tingly - especially around the left side and my lips. I get arrhythmia and feel icy cold in my feet and legs all though the days. I often feel I've wet myself when I really haven't. And most scary of all - I sometimes feel I'm going to fizzle out and stop breathing. This only happens when I'm resting or asleep.

I believe this is all part of my neuropathy that can't be pinned down. Is there anyway of diagnosing autonomic nervous system disorders - bearing in mind that I've had nerve conduction tests already and am in the NHS where resources are very stretched? Is this condition taken seriously by the medical profession or is it likely to be thought stress related? Can drugs help? I find it does significantly worsen on the lower dose of Prednisolone but I don't want to risk some sort of adrenal failure and my GP and neurologist and rheumatologist are all scratching their heads together about me now.

Maybe some good will come out of this for me but meanwhile what to do about the fear it is generating in me each night - the fear that my body is very slowly but surely closing down?
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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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