YOUR EM COMMUNITY NEEDS YOU! Dr Database: What is the the name of the Dr/specialist who diagnosed your EM and/or treating you?

Bumping this thread by adding to the list…

In Greenville, SC I was diagnosed by Dr Bruce Gray at the Vascular Health Alliance with Prisma Health at the Patewood campus.

Based upon my medical history and my hand turning a bright purple during the appointment I was diagnosed with EM on the first appointment. He prescribed mexiletine and it has helped quite a bit.

Desperately seeking Down Under :fire:

Kia ora,
Hi,
Does anyone know of any specialists in New Zealand that understands and works with patients who have EM and Raynauds?
Preferably in the North Island.

Thanks in advance :relaxed:

I have the terrible “brain zaps” when I forget to take my venlafaxine. Apparently harmless, but very unpleasant. If I ever need to stop taking it, it’s going to be quite an ordeal.

Not the North Island, sorry, but I’ve had good support here in Christchurch. EM seems fairly widely known in the specialist (not GP) community. I was diagnosed immediately, and am getting good support from Dr Rafi Raja, a rheumatologist. Ted Shipton, a specialist in pain management, is familiar with it, but is about due to retire. Nobody’s an expert here, because of rarity, but it’s definitely known about.

Hi Melly,

Regarding your statement about the snip, you are correct! Are you still on here? I would really appreciate speaking with you! My DX’s are Long QT syndrome sometimes with ST wave depression, sodium ion channel disorder/, & excruciating, EM!

I live in Phoenix, Arizona, and I’m open to any physician who will take a telehealth client if out of state. Thank you, I hope to hear from you and I hope you’re well!