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Old 01-02-2015, 10:39 PM #19
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en bloc en bloc is offline
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Location: Shenandoah Mountains, VA
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en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
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Yorkiemom,

I agree with Cyclelops about AAG. I have both dorsal root ganglionopathy as well as autoimmune autonomic ganglionopathy...causing peripheral neuropathy and severe autonomic symptoms. I too have a pacemaker (since 2004) and recently had a new one placed last year. My NMH (neurally mediated hypotension) is at the point of severely limiting my ability to be upright at times. It requires life-style adjustments as well as medications.

I can no longer use steroids (even low dose) as I have Cushing's syndrome from years of taking steroids either by IV or high & low dose orally. So I currently receive high dose IVIG monthly.

I have had plasmapharesis, but it is last resort type treatment and not effective or appropriate to do this every couple days for long term help...but it can/will help for acute or emergent situations.

The skin sensitivity (allodynia) can be from the reduced small nerve fibers (SFN). I don't think there is much to be done for this (other then finding materials that don't bother you so much). The magnesium lotion MrsD suggests for PN symptoms may help...worth a try.
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