My EM - is it is? (few doctors in Russia know about EM so I have no official diagnosis)

Hi Vinny,

Your pictures, triggers along with the fact that it worsens at night (when the nervous system transitions from sympathetic to parasympathetic) seem to point to EM.

To add to Carter’s Vitamin B12 comment, I had a Vitamin D deficiency (was at 19 ng/mL with the range being 30-100 ng/mL) so I started taking 5,000 IU once a day and the following month my value was 47 ng/mL so checking vitamin levels could be worth it.

There are primary and secondary forms of EM:

  • Primary EM has a genetic component, do others in your family have similar symptoms? If a mutation is found in your SCN9A gene, a sodium channel blocker such as Mexiletine can potentially help.
  • Secondary EM means it’s secondary to another disease (Myeloproliferative, diabetic neuropathy, autoimmune diseases etc…) and tackling the primary disease may put EM into remission.

Here is a research paper provided by site member JoeSchmoe which summarizes EM and it’s treatment options (which I shared with my doctor): Helpful Cumulative Review Paper

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