Un-diagnosed and being referred to a Rheumatologist
I believe i have EM and my Doctor does to. I am being referred to a Rheumatologist in a city 3 hours away from me in approximately 4 months. I was wondering if this is the right type of specialist doctor i should be seeing? What type of doctor diagnosed your EM?
Hi Deon.
I was diagnosed by a rheumatologist myself but I know others were by neurologists and dermatologists as well. I don’t know that any one type is known for treating EM it just comes down to finding the one that is familiar with it!
I have since learned it is not so easy to find a doctor who is familiar with it so it helps to make your own luck. I recommend printing out information on EM and taking it to your doctors appointment. Most doctors have never heard of it. You don’t need to find a doctor familiar with it as much as you need one that will admit to not knowing but willing to learn. If you feel they are not taking you serious or think you are crazy just find a new doctor. I don’t mean of fence to any doctors I just experienced a few along the way that couldn’t admit they didn’t know something. At the time I too had no idea and had never heard of EM. In my experiences some doctors thought if they don’t know what it is I must be crazy. It couldn’t be that they didn’t know something! I’m just saying if you don’t feel comfortable with the doctor you see you can go to another one until you find the right one for you. Oh and it helps to take some pics of your flares so they can see just incase it doesn’t happen when you are in the office. A picture is with a thousand words!
Take care,Alina.
Thats good to hear, hopefully this rheumatologist finds out if i have EM or not. And yes i definitely will be taking my pictures and EM info to the rheumatologist. Ive done that with my family doctor and he believes that i am right on thinking i have it. So hopefully i get some clarification in the upcoming months cause this has almost ruined my life for the past year and a half
Alina Delp said:
Hi Deon.
I was diagnosed by a rheumatologist myself but I know others were by neurologists and dermatologists as well. I don't know that any one type is known for treating EM it just comes down to finding the one that is familiar with it!
I have since learned it is not so easy to find a doctor who is familiar with it so it helps to make your own luck. I recommend printing out information on EM and taking it to your doctors appointment. Most doctors have never heard of it. You don't need to find a doctor familiar with it as much as you need one that will admit to not knowing but willing to learn. If you feel they are not taking you serious or think you are crazy just find a new doctor. I don't mean of fence to any doctors I just experienced a few along the way that couldn't admit they didn't know something. At the time I too had no idea and had never heard of EM. In my experiences some doctors thought if they don't know what it is I must be crazy. It couldn't be that they didn't know something! I'm just saying if you don't feel comfortable with the doctor you see you can go to another one until you find the right one for you. Oh and it helps to take some pics of your flares so they can see just incase it doesn't happen when you are in the office. A picture is with a thousand words!
Take care,Alina.
Hi, I was diagnosed by my GP, it was then confirmed by a rheumatologist and later confirmed by my neurologist. I totally agree with everything that Alina mentioned, find somebody who is willing to learn, willing to do trial and error treatments and who listens to your symptoms. I took detailed notes on symptoms, triggers and timing of flares as well as photos. I also walked to my first lot of appointments in the summer to make sure I was flaring by the time I saw my gp.!
Please let us know ho you get on with the appointment.!
Laura
I was also diagnosed by a rheumatologist after many trips to my PCP, immunologists, cardiologist, and neurologist. He also tested me for other possible causes. Things that nobody else ever mentioned to me.
Rheumy for me too.
And another "hear, hear!" to Alina's talk of finding a doc who will listen. I, too, had a few doctors who were completely unwilling to admit that perhaps there is a disorder they don't know about, and refused to look it up and be proven wrong. Some doctors have ego problems like that, and some don't - so if you find that being a wall between you and good care, get the heck outta there and find a new doctor!
I was lucky to get a recommendation for a nearby doctor here on this forum (a rheumatologist who'd seen EM a whopping two times, which was, sadly, pretty amazing). Before, I had even called doctors' offices and asked to find out if they were familiar with EM first off, so that I wouldn't waste time and money on doctors who knew less than I did.
Why are you seeing someone so far away if you're not sure that they're the right doc? Is that the closest rheumatologist to you?