Approaching Doctors apt--in need of advice!

Hi everyone! I’ve sifted through numerous discussions here, but for the sake of organization I thought this would be more effective.

I have my first doctors appointment with a vascular specialist after over a year of failed attempts. I still don’t know if this is a proper doctor to be seeing, but it’s a step in the right direction. Anyway-- as I navigate this alone (and continue to be pushed around by the medical community) I’ve realized I’m either not asking the right questions or not taking control of my treatment due to ignorance. SO I was wondering if there were certain questions I should be asking? Should I request particular tests? Should I be seeing a specific type of doctor?

I just want my appointments to be as informative as possible and unfortunately I don’t have all the right questions or requests! So any insight would be most appreciated :slight_smile:

Maybe ask for a referral to a pain specialist at a major teaching hospital?

Erythromelalgia is a neurovascular condition that presents at the skin, making it germane to a number of medical specialties. Doctors unaware of the condition will typically say it’s not in their field, even when it can be convincingly argued otherwise.

Thus, the single most important question needs to be asked in advance of your appointment — are you familiar with erythromelalgia and have you treated it before? You must verify in advance the doctor you are seeing is capable of treating you. Most doctors are not familiar with erythromelalgia.

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Hi Dalkola
I agree with Carter that most doctors don’t know about EM.

Speaking as a doctor myself with around 34 years experience it was an interesting (?) discovery to diagnose myself as a patient, after seeing several different types of specialists who didn’t pick it up.

Not trying to defend anyone, but it’s just how it is. There are literally thousands of rare diseases that most of us will never see. Contributing to this is an increasing sub specialisation and consequent narrowing of focus. Take the orthopaedic surgeon who only does ankles & feet, or the eye specialist who only does the front of the eye and cataracts but not the retina. I fully appreciate the frustration of seeing specialists and not coming away with answers. Worst still being dismissed.

By way of illustration at different stages I have had sub specialty interests in obstetrics, health promotion/ smoking cessation, medical education, mental health, chronic hyperventilation syndrome and now mindfulness meditation (very useful for chronic pain) and skin cancer diagnosis and management. But not EM, until now!

Note I’m here primarily as a patient, not as a doctor. They aren’t mutually exclusive.

We in the EM community can play an important role in educating our doctors, provided they are open minded, interested and supportive.

As mentioned there are a wide range of doctors who may be presented with EM. Dermatologists, neurologists, vascular surgeons, general physicians, pain specialists (who often have an anaesthetics background), paediatricians, rheumatologists, orthopaedic surgeons, sports & musculoskeletal physicians, podiatrists etc and last but certainly not least general practitioners (family physicians depending on where you are based). So seeing a vascular surgeon is one of many good places to start.

To recap, there is no one particular subspecialty of doctor you should see, rather it’s the attitude one should be looking for:

Mutual trust

Suggested questions (preferably before you book, ask the secretary)
I think I may have EM which is a rare condition. Has the doctor had any experience with EM? If not, can you recommend a colleague who has?

If they are not interested, keep asking around.

If you don’t have access to one nearby, put the same questions to your family doctor who provided they have some or all of the above qualities will be able to look into it, as I have done myself. They can support you with managing it including trials of different medications if you would like to do that.

The features of EM, or suspected EM can be presented to your doctor and hopefully you will have some photos to show.

Is it, or could it be EM, rather than something else? There are other conditions that should be considered and excluded.

The next step is to determine whether it’s primary or secondary, which will be guided by your past & present medical history as well as a physical examination and a number of investigations.

The many medication and non medication options are discussed elsewhere on these forums. No one size fits all. Some help, some don’t. Go gently with dose changes. Hopefully one or more of the more selective and better tolerated (than current) sodium channel blockers will successfully get through clinical trials and become available. Soon!!! Please :))

Although I only recently joined here myself it certainly seems very supportive which is a credit to this EM community. So thanks everyone!

Which is why the jobs of doctors who diagnose are at high risk for automation by artificial intelligence (AI) in the coming decade. When my symptoms began, a half dozen doctors saw me and didn’t know what was wrong. Using the proper search terms and Google Images, I diagnosed myself within a couple hours. The UK’s National Health Service is already testing AI in place of doctors to diagnose patients. Computers are going to replace doctors and that will greatly benefit patients with rare diseases.

But that’s a discussion for a different thread. :grinning:

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Wow! Thank you everyone for the thoughtful answers and insight. I already feel more equipped going in to this appointment. I hope I find some level of relief soon as I’m growing more weary with these daily flares. I live in a small town so there aren’t many options for clinics or specialists—but hopefully these questions will lead me in the right direction and I’ll find someone open to working with me!!

The best thing I did was take a picture of my feet when they were really red. The neurologist even said the picture I brought made up his mind that I definitely had it.


Take along your phone or tablet and show whoever you see this place. It was the only way I got doctors to take notice.


Agree. Good suggestion

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