It took me 2 years of non stop searching to find a doctor who would listen and believe me. I now have a good team of doctors helping me. Funny if you can just get that first doctor then it tends to go more smoothly because they send their records over stating you have these symptoms and they will then believe you because they heard it from another doctor!
I first found my GP. He was kind and listened from the start. He believed me and said those magic words......I don't know.
He said ..I don't know but we are going to figure this out. It might take a while but we will. If you can find a doctor capable of acknowledging he/she doesn't know everything and cares enough to find out what is going on that's your first step.
I had seen at least 10 different doctors before finding mine DR bateman in Tacoma Washington. If you live in Washington state he is the one to see. He had no knowledge of EM and it still took a good year after seeing him to figure this out but he never gave up. He would send me to sapecialists he thought might be able to help and I saw him no less than once a month. I didn't have to do one test then wait 3 or more months to see him again and go from there. He even took out this giant medical book with me in his office to search through it looking for anything that might be causing this.
After seeing the specialists he sent me to ( Rheumatologist, vascular surgeon, Dermatologist, Neurologist, And I am sure many more) If I came back to him and said they didn't listen or believe me he would just write out another referral to see a different one! After all of that we still had no answers so he thought I should see someone that deals with rare unknown diseases and started the paper work for me to get into a research study on the east coast. He also submitted a referral for me to see a vascular specialist at the Mayo clinic in Rochester MN. Even after hearing back from the Mayo clinic that They didn't think I would benefit from a vascular specialist there and was denied he resubmitted a referral there to see an internal medicine Doctor he said just to get your foot in the door. In the end I saw a good 10 to 15 different doctors at the Mayo clinic and was there for a month but I left with a diagnosis of EM!!!!!!
As terrible as wwEM is I was just so happy to have a diagnosis. No more being told I was crazy!!!! I even had to go through 3 different Psychological evaluations through the years and one at the Mayo clinic. I'm talking taking this 2 hour test to see if I was crazy. Every time I passed with flying colors. I wanted to get some sort of ribbon that said certifiably not crazy to wear to my future doctors appointments!!!
After My EM diagnosis I came home and we started out trying to find an EM doctor. We couldn't find one that knows how to treat it per say but we did find a Rheumatologist that is willing to go through the research papers I bring to her and try the varying treatment. I also got in with a pain clinic that had no previous knowledge but they are willing to be educated with my research I bring in and work with me that way. My pain doctor just started me last week with a lidocaine infusion and mexilitine !!!!!! That is for another post which I will do shortly.
Sorry about the long story but it was a long process! My tips.... Don't give up. If they don't listen or believe you Just go somewhere else till you find someone that does. This can take seeing 10- 20 different doctors and a few years but it s well worth it.
Find someone that is willing to admit they don't know and willing to read and use EM research documents you bring to them.
It is important to find someone that doesn't hold Depression against you. Depressed people get sick too!!! Often the illness itself is what is causing the depression not the other way around. I wish depression kept you from getting any other medical condition! I would work on getting depressed straight away!
Hang in there , don't give up, You will eventually find the help you need.
I am sorry it is such a process. I know it well.
Take care,
Alina
