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!
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!
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.
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!