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Erythromelagia

 
 
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Old 06-21-2013, 10:49 AM #1
Mads Mads is offline
Junior Member
  
Join Date: Mar 2013
Location: England
Posts: 29
10 yr Member
Mads Mads is offline
Junior Member
 
Join Date: Mar 2013
Location: England
Posts: 29
10 yr Member
Default Erythromelagia
Hello everyone,

Have been diagnosed -at last - with rare disorder erythromelagia (EM) - now widespread throughout body - including scalp, ears. This disorder has totally disabled me -my flares are near on continuous at present. Specialist starting me on IV lidocaine urgently as nothing else in terms of medication ie pregaba, naproxen, venlafaxine etc. has helped . Has anyone had this treatment? Also shout out to Mrs D for any info/advice she could give me please.

Am following Dr Cohen - taking high dose mag, omega, VitD etc... Also aspirin theory 350 day to facilitate vasodilation . Toxin free diet. cold/icepacks etc... Specialist wants me to continue with all of this.

Thank you

God bless
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