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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)

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@becsbuddy

Good morning, @runwthme , You sound just like I did 3 years ago. Overnight, my whole life changed. The local doctors weren’t helpful at all. I was finally hospitalized because I was in bad shape. The doctors did an MRI. of my brain but couldn’t tell what they were
wlooking at. My husband said enough is enough and got an appointment with a neurologiy-inflammatory doctor and I’ve been going there ever since. To be sure, it has t been a bed of roses, but they know what they’re talking about.
So, to make a long story shorter, you want to find an experienced rheumatologist or just go to a large medical center or university medical center. Write down everything that happened, a timeline, whatever you can think of and take it with you. I wish you a lot of luck and all the best. ADVOCATE for yourself! Be sure to let me know what happens-will you? Becky

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Replies to "Good morning, @runwthme , You sound just like I did 3 years ago. Overnight, my whole..."

Thank you for your reply. I was taking so many notes and explained to my doctors they would get this look on their face🤯 and not know how to address. I’ve switched Drs so many times and realized it’s worth doing that until you find the dr you like. Yes, I also learned I must advocate for myself. That I had to learn. Interesting you started the same way, overnight. Crazy right? I always think I just need to be “ rebooted” as there is some electrical problem. 😉.