I have seen many specialists in the last couple of years without a diagnosis. I finally decided to do some research on my own and stumbled upon EM which seems to explain my symptoms (my rheumatologist suspects that I may have lupus, but blood tests have not confirmed this). My question is how does one bring up a possible illness (especially a rare one) without offending the Dr. or sounding like a hypochondriac? I have had some very negative experiences with doctors in the past and I would like some input as to how you all have approached this situation.
I'm amazed no one responded to your question since it's a common issue with EMers. I was diagnosed after taking a printout from TEA that included photos of EM to my primary care doctor, along with photos of my own feet during different stages of flare. Until then, no doctors believed my description of what my feet do. Doctor's offices then were all so cold that I never had flares there, just everywhere else I went.
I find that most doctors don't want to deal with EM because they know nothing about it. Makes them frustated to not know how to help. And that's the ones who don't just assume it's all in your head. The photos help tremendously with that particular issue though.
My wife and I also found our own diagnosis and brought a printout of the conditions symptoms and such and her doctor simply said "yup that looks like it". I would bring it up as a suggestion, like, "hey doc we found this what do you think?"
Yes, that's how my GP learned of EM. He had referred me to a Hematologist & after 4 phlebotomies the specialist suggested I get a referral to a Rheumatologist from my GP because he (the Hemo) didn't know what it was or how to treat it.
I told my GP I had looked online of the complications of Polycythemia & had Googled "burning feet syndrome" which led me to EM. He took the time to look online during my appointment & started me on Lyrica. I have only been on it for a week and a half & feel like a NEW woman !!!
I got diagnosed by a neurologist so I had no problem with this.
All I can say is if you have EM, your hospital/clinic vists are going to be pretty tough from here on, your going to meet lots of dr or nurses who don’t have a clue, due to this being so rare! I get told a lot of people that they will have to go 'google it ’ which makes me insecure being in their bands. To me I have learned, don worry about your drs feelings, a good dr will ALWAYS listen and accept your input, as if it don’t get said you are going to o un treated just tell him all the info you found, and everything. Although I have found a lot o drs who don’t know EM and try to think they do just because there. Trained drs, but sometimes in cases like ours, the patient KNOWS BEST. But I think it would be also wise to look into switching to another doctor who can assist you better.
Thank you all for your responses. I will definitely take some photos of my hands and feet (and in my case my ears and nose as well) since they never seem to be badly affected during Dr. appointments. I wish that I had the option of seeing a different Dr, but I am relegated to the military base where I am stationed, so unless SHE refers me off base I am stuck which is why I am concerned about how I bring this up...
Honestly don’t worry about it, I was the same in the beginning for appointments my feet would be fine! Lol it was far too annoying, hope it goes well and you get the right diagnosis and cared for.
If the doctor reacts favorably to photos of EM printed from TEA compared to your photos, you may also want to provide a printout of Gene Reviews' info on EM. It's far more up to date and thorough than the Merck Manual and includes info on inherited or secondary types, with treatment info included. It's what my geneticist gave me and I do find it most comprehensive for a single article. My docs have never been good at finding very good EM info on their own. You can google it easily.
BTW - Sarna anti-itch lotion sometimes stopped flushing in my ears if used immediately, until I became allergic to a preservative in it. But that's the story of my life...
Good luck with the doc!
belladonna893 said:
I will definitely take some photos of my hands and feet (and in my case my ears and nose as well)... I wish that I had the option of seeing a different Dr, but I am relegated to the military base where I am stationed, so unless SHE refers me off base I am stuck which is why I am concerned about how I bring this up...
After many years of no diagnosis I also brought lots of information to the new family doctor I just got...he took a quick look at it, and said "how do you know this is what you have? then said he heard of this....going to do his own tests...sent me for bloodwork...which will show nothing, never has...only thing over the years that any doctor found out is that the nerve endings in my feet don't work properly...after two skin biopsy's and a nerve biopsy ...the disease is so visible, why can't they just take the information and read it???
oh well, been living with it for so long now, nothing surprises me.
Hi Bingolover - has your Dr. ever diagnosed anything for you? Are you receiving any treatment at all? This is just so discouraging to see that there are so many people going through this only to have doctors refuse treatment. My rheumatologist told me a few weeks ago that this is probably something I'll just have to learn to deal with and that not every ache or pain requires medication. I left the office feeling so defeated. Hope things are going better for you!
Bingolover said:
After many years of no diagnosis I also brought lots of information to the new family doctor I just got...he took a quick look at it, and said "how do you know this is what you have? then said he heard of this....going to do his own tests...sent me for bloodwork...which will show nothing, never has...only thing over the years that any doctor found out is that the nerve endings in my feet don't work properly...after two skin biopsy's and a nerve biopsy ...the disease is so visible, why can't they just take the information and read it???
oh well, been living with it for so long now, nothing surprises me.
Nope, still waiting for an official diagnosis....stopped seeing doctors for 6 years...just got tired of them looking at me and saying you have to live with it, whatever it is...no kidding...that is what I have been doing....want to get on disability as too difficult to work as can;t stand for any length of time and my hands have gotten worse and worse...so need an diagnosis in order to do so....but who knows....have to just wait and see with this new doctor...l
Do you have Facebook? As a group on there (Erythromelalgia burning a path to a cure) there is quite a löt of people from your side of the world that might be able to give you hospital details of someone who knows as a lot say there's certain teaching hospitals. Thats a shame they aren't listning to you! My downside is they know EM, all about it, but anything else gets wrong with my body now, they just blame EM for the easiness of it, when I know its not, but they do not give me the health care I need, due to a lot of drs not knowing EM, they think because it's rare ad they don't know it, for a simple life àrent going to look for anyhing else it is very annoying!
Bingolover said:
Nope, still waiting for an official diagnosis....stopped seeing doctors for 6 years...just got tired of them looking at me and saying you have to live with it, whatever it is...no kidding...that is what I have been doing....want to get on disability as too difficult to work as can;t stand for any length of time and my hands have gotten worse and worse...so need an diagnosis in order to do so....but who knows....have to just wait and see with this new doctor...l
It seems like a large part of the problem in getting treatment is docs don't understand the severity of the pain. My neurologist at least is communicative enough that I realize that's half the problem and that the other half is he doesn't know how best to treat it and is afraid of recommending something that makes matters worse.
He is willing to treat me, but I have to do my own research first and send him something in writing ahead of time about what I want to try so he has time to research it before my appointment. I'm learning that key to my getting medical care is not to find a local expert if there isn't one. The key is finding a doctor willing to team with me and then doing my own investigation of treatment options on PubMed, Gene Reviews, TEA and giving the doc that written info or a link.