Huge shout out to Dr Nguyen at dermatology solutions in Gilbert Az. She was the first person who actually listened to me and looked at my pictures and was engaged in conversation with me. I told her i googled symptoms over 2 years ago but had been blown off dr after dr. I told her i joined this group trying to compare and find support as i struggled threw this. She asked me a lot of stuff like was i diabetic, pre menopausal, thyroid problems, lupus i said no and then she ran my hands under the water and that was it she said yes i had EM and that it’s so hard to get a diagnosis cause there are just not a lot of cases and doctors who have scene it. I’m so thankful that i finally found someone to listen to me. She is going to call her friend at Mayo and get some help from his on different treatment plans. For no i have to take 1 baby aspirin, Zyrtec, an antidepressant and stay on my gabapentin. I go back and see her in 4 weeks to see if any of this helps if not she said it’s trial and error on meds unfortunately as we all have read and know. I was just happy to know i wasn’t crazy and i do in fact have EM. She said avoid stress hot temps alcohol the stuff we already know the problem is our body’s internal clock is busted so to speak so keeping things under control and regulated is harder than it seems and i live in freakin Arizona so hot it all the time. One day at a time and now that someone is there to listen and help I’m at least more hopeful.
So glad to hear you found a doctor you liked! xx I know you’ve been looking for a diagnosis for too long now. I dont think anyone here thought you were crazy lol – it’s just the doctors who sometimes make us feel that way 
best wishes
standing_cat,
Ya thank god i found this site and you guys to talk with because if i hadn’t i think i would of gone crazy feeling so alone. I think doctors blow things off that they cant have a definitive answer for therefore you bounce around like a ball until you finally find someone. I was getting tired of the shut doors but I’m glad i kept going and didn’t let the let downs get the best of me. I learn different things everyday just by talking with you and others on this group so I’m grateful for sure for this site. Hope your staying cool things are getting hot her highs in the 80’s and my body is already acting like it’s 100 outside so it’s gonna be a rough summer i think.
Stay cool
So glad you got diagnosed after such a long struggle! Living in sunny South Africa I can really sympathize with the heat you are battling with. My symptoms are better most of the time, but not away altogether. I am on Pregabalin and find it better than the gabapentin. And the aspirin, I am taking a 100mg cardio aspirin, as well as 10 mag Amitriptyline at night. Heat is still the biggest problem I am battling with. Hang in there and join the facebook page for EM, I found it really helpfull.
Hi,
Just having a Doctor that listens is a great help and imediately makes you feel better.
Just so glad you now have somebody to talk to that listens and mostly understands.
Iris
Frosti,
Wow South Africa ya pretty HOT there glad to here your finding some meds helpful. I used to take Amitriptyline a few years ago but then was taken off. I think maybe i have just been on the gabapentin so long it doesn’t work anymore. Its hard to escape heat when we live where we do it’s only just beginning here and I’m already to hot even inside. I was cleaning this morning and became very hot legs and feet started with the pins and needle feeling finally had to lay under my fan and try to coo down ugh and it’s only 1030 am. Well hope you are trying to keep as cool as you can but i do know how it goes I’m on the struggle bus myself.
- List item
Ya it’s nice to have someone in the medical field in your corner trying to help you find relief and who knows about the disease. been taking the aspirin and Zyrtec not really noticing that’s it’s helping yet not sure how long it takes to really know but will continue to take it and then when i see her again in a couple of weeks have a better idea of if i need something else or a different dose. I know it’s a trial to find the right thing and even then it dosent cure it.
hope your doing well and staying cool