Hello. My name is Alina and I have yet to have this diagnosis but am at the Mayo clinic at this time. I had never heard of Erythromelalgia until my appointment here at the mayo. My rheumatologist / vascular specialist saw my photos and my feet( during very mild flair) along with my account of the last 2 years and he set me up with an appointment with the best specialist for Erythromelalgia next week. For the first time ever he gave me a print out of information and suggested I go to the medical libraries for more information. I researched and read all I can including all of your accounts( thank you!) it as if I wrote them myself. Is there any thing I should know for my upcoming appointment? Any questions I can't forget to ask? The person who set my appointment said usually there is another week or more of testing after my first consult. Does any one have any information on what I might expect? Thank you so much for your time and support. I greatly appreciate it.

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Hi Alina,
Which Mayo Clinic are you going to? I went to the Jacksonville Mayo. Have they ran any tests on you yet?
Kelly
I'm curious about the abswers you'll get as I have not yet been dr diagnosed but self diagnosed. We are planning to head to mayo too aftertaste baby is born in 3 weeks. Good luck to you!!!

the mayo clinic in Minnesota is good my husband went for something that we had been dealing with for 3 years. and we had an answer after three days. good luck

Well at least you seem to be heading in the right direction, you may get some useful help there.
I was diagnosed 2 years ago although not so "officially" as to have passed so many tests, I did have a couple of EMG's, a brain scan, an MRI that showed no anormalities so after eliminating all other possibilities and following my personal account of symptoms during flare ups I was diagnosed with PRIMARY EM. My suggestion to you is READ all you can about the disease, the cause i.e. SCN9A gene, sodium channel...AND more importantly, take note of all the possible medication you have heard about on this website, you will find all this invaluable information on the discussion forums, this will help you immensely if you are diagnosed, as different medication is used by several people and does not have the same benefits for all...beware of side effects !!!Good luck and welcome to the site!Please keep us posted on your experience, we need all the info we can get!

Just recently read that CALCIUM BETA BLOCKERS help w/the symptoms of ET.  I have ET as a secondary to my Polycythemia Vera [Myloproliferative Neoplasm] and low dose aspirin helped "sometimes" but never completely.  A few months ago, my BP med was changed and a Calcium Beta Blocker added [not related to the ET dx from my hematologist] and I've noticed that I hardly have any symptoms at all..especially the redness in my shins!  Ask about that research/claim, which I believe I read on the ET Foundation website two days ago, putting the two together, so certainly wondering!  Good luck w/your appointment - you couldn't be going to a better place for help!

 

You are very fortunate in having a specialist that zoomed in on the diagnosis and scheduled you with some of the top specialists in the country. My diagnosis was confirmed by a dermatologist who had done a fellowship at Mayo. She saw 4it or 5 cases almost 15every years ago. The research she handed me was a paragraph written by 2 physicians out of Beirut, Lebanon. I have gotten the most help out of my rheumatologist. I self diagnosed and all my physicians agreed bit it took 6 months to find one that had seen it . I basically flare all the time so there is no issues about them seeing it. I have Raynouds aa well, so basically I am very patrioti aa it is not unusual to be red, white and blue at the same time! Neurontin takes the edge off for me. I have it in my feet, hands and face. Best of luck and please post what workup they so, treatment plan etc.!
Thank you all for the great info. I have been here at mayo for 2 weeks now and today I have no appointments for the first time. I have seen rheumatologist / vascular,endocrinologist ,internal medacine,second rheumatologist, sleep doctor ,neurologist,Phsycologist, and all testing they have done so it's been a busy 2 weeks! Funny thing,even here at mayo they call me paculiar ! I will be sure to Post my experiences with this physician and the many tests they run. I have started a list for my doctor from everyone's posts regarding medications and possible causes. I don't know if this is common with any one or if is from a different cause but does anyone have nightly( I mean every night!) pain in your fingers( severe pain like broken fingers! ) and extremely difficult to bend? Even when they don't burn I still have these awful pains. The doctors say I have degenerative arthritis and it is a mild case. They say possible my EM is making my arthritis hypersensitive. Does that sound right? This pain nightly has been going on for 6 months straight. Thanks again everyone!

Yes, Alina, not every night, but most nights and the pain runs into my arms as well.  The feet and legs also are sooooo filled w/pain that many nights I cannot sleep.  I never know whether it is due to the ET or PV!!!

I have many pillows surrounding me in my bed..to cushion arms and legs - always.

Keep us posted! 

Funny... You would think I would cry a lot but I just don't. Being here and speaking with you all has brought me to tears. In a good way. I am strangely very happy and at peace with this( maybe because I am not at my worst! But I'll take it!)something to be said about so much friendship and support from people you have never met just doesn't sese to amaze me!

The Dr. I saw recently in Toronto, did a number of blood tests to rule out any underlying disease that could be causing your flares besides EM. But we both knew it was EM! The Dr will talk to you about the different treatment options. Unfortunately there isn't a "one size fits all" treatment, [what we all pray for!]. It's all trial and error. No one has any idea what will or won't work for you until you try.

I'd suggest trying the minimal drug doses you can to start. I find Amytriptaline an easy one to start with as sometimes a low dose can work and there are fewer side effects than with some of the other drugs. For me, 3 days on 10mg and I saw results.  But there are many other drugs people use, a you've read here online. It may take some time to go thru the many treatment options. Be patient and I hope something works for you soon! You're fortunate you found someone fairly soon who understood your symptoms. Many of us suffered for years before anyone told us what it was. I had to do my own research online as none of my Dr's ever mentioned EM.

Good Luck!

Thank you. It helps to know more about how the diagnosis itself tends to go. I have been tested for everything under the sun in the last 2 years so I too am quite confident this has to be EM. All other doctors here at Mayo are just as perplexed so if it's not EM and I've seen every kind of specialist at the mayo clinic then I will be out of recourses. So strangely enough I hope it is. What ever it is it's here naming it doesn't take that away but it does help get better help with dealing with it. Thanks again.

There are probably other conditions that haven't yet been eliminated or that could be causing your EM, even though you've had so many tests. There are disorders that doctors don't think of since they are rare (like EM). For instance, mast cell activation syndrome, Orthostatic Intolerance or another kind of Dysautonomia, an inherited connective tissue disorder like Ehlers-Danlos, etc. The connection isn't clear, but some people seem to have a constellation of those with EM and it's looking like I do. There are many disorders out there that affect blood vessels. Lots of research is going on with these conditions. 

I've heard that Mayo is great at diagnosing EM but not as great at treatment for it, but that may only be true of one particular dr/location. And getting an accurate diagnosis is half the battle. It'd be helpful if they can tell you if there is more evaluation you should pursue to rule out a disorder that could be causing Secondary EM (controversial) or if you have the kind caused by vasoconstriction vs vasodilation. Those little clues could help you choose meds for tx. You'll still have to experiment though to see what works for you. I don't suppose they have a tilt table and can check you for the Orthostatic Intolerance if you have symptoms that fit that? I would think Mayo may have one. I've run into other EMers who also had OI, like me, who get blood pooling in the feet if they stand too long, and that can trigger the EM episodes (among other things), so needs to be treated even if the other symptoms aren't severe.

Good luck to you with finding answers and help! 

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