I am an undiagnosed EM sufferer. I finally have a neurologist appointment and was wondering if anyone has an recommendations to help with diagnosis.
I’m going to bring up 1.) small fiber nerve testing and 2.) maybe testing to rule out MS.
I’m just trying to eliminate things at this point and hopefully find a doctor that understands EM a little bit.
What I started to do was take with me either my iPad or print out the page about what EM is along with me to the appointment, as so many doctors have never heard of it.
Whats most helpful to your docs is your experiences more so that “test this” although there is a way to “cheat on that” sort of the lead a horse to water.
Keep a log of ALL your symptoms and especially the "when This then this happens (a what where and when) this makes it better, this makes it worse etc. Not only the big thing that happens but what happened before the little things ie “I got this tingling in my neck going down my arm and then it felt like someone took a blow torch to my feet” sort of things THE MORE the better of these experiences.
Now how to cheat: read about those tests in detail make a list of the symptoms that indicate when they are done (the Mayo site is great) make a list of those symptoms that YOU have had lay them out for the doc and innocently ask “what do you think is causing this?”
In this age of information most docs appreciate you educating yourself and asking “intelligent” questions. If he sneers at it - fire him. BUT be careful not to “medicalize” (using a lot of medical terms to describe things) this is often a red flag to docs that they may be dealing with a somatic patient.and the detailed description with diagnoses you are giving him may back fire.
I was diagnosed at the Mayo Clinic and they wanted to see pictures of my flare ups. Since you don’t always flare when you are at the doctor office they really utalized the pictures. They also recommended I take them all on a black background and make sure they were really in focus. They also wanted a list of what triggered a flare up for me and what helped when I had a flare up.
Hope this helps!
Thanks everyone for the suggestions! Im going to arm myself with pictures and a positive attitude. Hopefully my doctor will be informed and open