How were you diagnosed? What kind of testing did you have done?

I was wondering how most of you were diagnosed? What kind of Dr. diagnosed you? What kind of testing did you have done. What did they base diagnosis on? What kind of Dr. is now treating you for EM?

All the testing that Mayo Clinic did when it came to testing me before they said it was EM is all listed on my caring-bridge page http://www.caringbridge.org/visit/havhv just click on journal I had A LOT of tests done!!! I am not sure what they based the diagnosis on. I have not been back to see a doctor since because Dr. Davis basically told me that I just need to figure out how to live my life and I have went off half of the medication that I was prescribed to begin with since I just had more side effects from the prescriptions than was really helping the Em

My wife made an app. with her Dr. because of her burning hands and he refered her to a dermatologist as he was not sure what cause the burning. Her dermatologist was the one that diagnosed that she may have EM as she had heard of it before. My wife now has it in both hands and both feet ( more the right foot ) and is presently on Gabapentin, however not a lot of relief from this medication. The first medication she was on was venlafaxine which did not seem to work that well either. Hopfully her DR. will find something that will give her more relief soon as summer is coming fast and she is dreading the hot weather coming.She had blood tests and also shock treatment in the beginning to try to determine what she had.

At first my GP - who had never heard of EM - diagnosed me after I asked him to look it up - as I had done - finding it was the nearest match I could get to my symptoms.

He referred me to a Rheumatologist as it seemed the way some other members on this site had been diagnosed. I had my official diagnosis last week. It appears I have primary EM (unless blood tests show otherwise) as the rheumatologist could find no underlying cause for my symptoms. I am now back to my GP for treatment which at present is helping.

I only had a physical exam and bloods taken.

I hope you find the help you need.

I have not been officially diagnosed; however, I went to Mayo Clinic in July of this past year and they gave me a "potential

EM diagnosis; however, because I didn't have redness or swelling at the time, they didn't do what they called a "EM Profile Diagnostic Study" which the neurologist told me consisted of doing vascular studies while you did not have symptoms and while you did. It was very frustrating because it took months to get the appointment, but hte nature of this condition seems to be that it comes and goes. I sometimes have burning but nothing like others describe, and I also have coldness and swelling as often as I have heat, so I am wondering if I should go back there to confirm diagnosis. I asked if there are any doctors in the Chicagoland area that have knowledge about this condition and was told no.

I was told that Dr. Mark Davis (derematologist) and Dr. Sandroni (neurologist) specialize in Mayo (Minnesota) with this condition. Good luck!

Dr Mark Davis was also the doctor I saw it took me almost a year to get in there and I also did not have a flare up while I was there :-(

Heather, what tests did they do to confirm diagnosis? I'm curious. What, if anything, did he recommend, besides saying to learn to live with it?



HeatherVancil said:

Dr Mark Davis was also the doctor I saw it took me almost a year to get in there and I also did not have a flare up while I was there :-(



alynn said:

Heather, what tests did they do to confirm diagnosis? I'm curious. What, if anything, did he recommend, besides saying to learn to live with it?



HeatherVancil said:

Dr Mark Davis was also the doctor I saw it took me almost a year to get in there and I also did not have a flare up while I was there :-(

I was diagnosed with EM after several tests including blood tests. I cannot remember what all the tests were except that I had to plunge both hands in a bucket of ice and leave them there for what seemed a long, painful time. When I removed my hands from the ice it was timed to see how long they took to get back to normal. They took ten times longer than a person without EM to recover. The tests were carried out at the Royal Free in London in 1999 and I was offered treatment whereby I would have to stay in hospital for 6 days having a drug (?sorry) administered by drip. I was told that I would probably suffer a bad headache for the duration of this time and that if it was successful it would not be a permanent solution. I declined the offer and also stopped taking various drugs as the side effects were bad. I get by by trying to keep my hands and feet at the same temperature all the time if possible. This means socks in bed and fur-lined boots in winter here in Cape Town where central heating is not the norm. When the nights are as warm as the days I am better but the EM is always with me but I embrace it as being part of me, breath deeply all the times I remember as I am naturally a shallow breather. I have some ulcers on my fingers and some toes are very numb. One foot is particularly painful and tingly after a plate and seven pins were inserted after an ankle break. My hands are painfully repelled if I touch anything cold and my feet feel as if darning needles are being inserted if the air con in the car is on too high. Every night I awake with burning hands and feet so I get up and walk about until I am cooler and the bed is cooler. I am grateful it is not worse than it is.

Lyn Cape Town

Hello ~ I was diagnosed at Mayo Clinic in Scottsdale AZ. I had all sorts of tests done. A "Heat test" where they put you in a bed, measure your outer leg temperature, then put your feet under like Heat Lamps, they heat you up purposefully to see how fast you heat up vs. the ratio compared to others that don't have it. I had "sweat tests" done. They measured my perspiration in my feet (People with EM usually have NO or little sweat in the EM areas). I had another funky test where they strapped me to a bed, arms out, laying horizontal. They flipped me up fast, arms still strapped down and out (picture Jesus on the cross) I had a ton of electrodes all over, feet, arms, head, heart. They measure the blood flow, pressure, and response vs. "normal" people. I had Breathing tests too, they purposefully try to make you hyperventialte, to see the recovery time to your brain for oxygen. I was diagnosed by a neuromuscular surgeon. He was 71 years old at the time, and a speacilist in the study of A.L.S. (Lou Gherigs Disease) I was his 8th patient ever with EM. Previouslly I have been seen by dermatologists, an endocronologist, a rhuemetologist, 3 other neurologists, a ortheppedic surgeon, 2 podiatrists, and an oncologist, (who was fabulous, and would help me brainstorm) I have been through 5 G.P.'s. and had 2 M. R . I's. I have a bit of degeneration in my spine for only being 30 at the time, thus the M. R. i.'s. They have DNA testing too. It took me 18 months to get in to the Mayo Clinic here, (after I had finally got the referral) and it didn't exactly provide the "AH-HA Moment" I was hoping for. We are all strong together~~~~ Love and light, Heidi

I was diagnosed 6 years ago at the age of 12, I don’t remember all the facts! Although I know the main things you are asking.
I got sent by my GP to a Neurologist, who did not know what EM was, nether did I, she just looked in to all possibilities for the symptoms I was describing, she arranged me to get EMG testing, and discovered I had nerve damage to my sensory nerves, that was the first thing they found with me! They admitted me into hosp for a week to do lots of tests, lumpur punctures, all kind of bloods, CT scans the lot! And nothing at all, then a month later she contacted me with the EM inquiry, she took my bloods which got sent to Germany or EM testing, genetic EM, and that took a year to come back but she was positive it was EM and I looked in to it and discovered it was ALL my symptoms. Tests came back it was EM just not genetic, so I was just unlucky and they reckon I was born with it, when I was ver young I would complain with aching pain in my legs which the doctors at the time said was ‘growing pains’ but they now think that was slight signs of EM.
I now continue to see my neurologist, a year ago I went and saw a top professor in London who has been dealing with EM patients for more than 30 years! Which was a relief and reassuring in his company, he also told me EM symptoms I had but didn’t realise they were EM related!. So now him and my neurologist discuss options of new meds, I’m just about to get on new EM meds which I don’t know what ones is next for trial but I’m hopefull that it’s helpfull.
You really need to get a good doctor, Mabey a neurologist although some say dermatologists too! , from my experience though neurologists are more used to this kind of nerve thing, where a derm are into the cream and lotion side which is not really any good! My neurologists searched for other professors and top health people to get me options and trial and errors, and if a doctor says ‘I don’t know about EM’ or doesn’t bother to find any other people, trust me it will cause a whole lotta problems down the line which ain’t worth it when there not giving you proper care!
(sorry about this long story haha!)

Go to my caring bridge page and read the journal there is to much to rewrite but I think it would be benifital for anyone who has not tried some of the test I did to get themselves tested http://www.caringbridge.org/visit/havhv ju

alynn said:

Heather, what tests did they do to confirm diagnosis? I'm curious. What, if anything, did he recommend, besides saying to learn to live with it?



HeatherVancil said:

Dr Mark Davis was also the doctor I saw it took me almost a year to get in there and I also did

not have a flare up while I was there :-(

I was diagnosed over 25 years ago. I had a infra-red thermography scan (an image of the heat produced by the body) and the result was so hot that they had to recalibrate the scan several times! I also had a very primitive forerunner of laser doppler imaging, a test I've had done recently. This uses a laser to see how the blood is flowing under the skin, it shows up EM wonderfully. It was the results of these tests, plus negative tests for other conditions that led to my diagnosis. In fact the first person to "diagnose" EM wasn't a doctor, it was the medical physicist who did the thermography and laser doppler tests. He recommended the vascular medicine doctor who formally diagnosed me.

I am still under that same consultant in vascular medicine, although some rheumatologists deal with EM because the related Raynaud's disease is often seen in people with arthritis. Another specialty that may deal with EM is dermatology. I would recommend finding a doctor by asking on this site for an expert in the condition. If the doctor is far away from you, you could contact them to ask for a recommendation of someone closer. As EM is so rare, doctors who even know what it is are not common, those who have seen it are rare and those who can actually treat it are even rarer than EM itself.

I would recommend seeing an expert in EM before you have any expensive tests, as they may well be able to diagnose you simply by taking a thorough history and looking at the results of tests you've had already.

Thanks for your response. Did you find it helpful? Did you by any chance see Dr. Rooke in Vascular studies? I am trying to determine if I should go back to have this actually diagnosed. I'm confused because I don't have the burning pain that many people describe. My foot will get very red and feel cold or sometimes itchy, veins very swollen, but not burning, on fire feeling. They told me that if symptoms persist to return, but I'm just wondering who to see. I'm just not sure this is what I have, but I definitely have something that is temperature related--veins and temperature. Thanks so much for your help. I appreciate it.

alynn said:

Heather, what tests did they do to confirm diagnosis? I'm curious. What, if anything, did he recommend, besides saying to learn to live with it?



HeatherVancil said:

Dr Mark Davis was also the doctor I saw it took me almost a year to get in there and I also did not have a flare up while I was there :-(