I had my initial appointment with the EM Clinic at Mayo in MN today. I have classic primary EM symptoms (had them since age 9, currently age 21, no underlying conditions that I know of with the exception of being on daily stimulants for ADHD for years) and Dr. Julio Sartori (who is super sweet) listened to me talk about what was going on with my feet and immediately said it definitely sounded like EM. Testing tomorrow just to confirm there are no underlying conditions (blood test, EMC, and sweat test). Any ideas for questions I should ask in my final appointment with him on Thursday, or just general thoughts on the process?
If nothing serious is present after testing, I would ask about trying mexiletine as it has a relatively good response in younger people (myself included). They will more than likely send you home with a diagnosis, info packets, and their trademark ketamin/amitriptyline based cream but I would ask about trying something with potential for near complete resolution.
This x1000. I would asked to get genetically tested for the SCN9A gene and try Mexilitine. I’d start slowly and work up to 150mg 3x a day. Has been very beneficial to me and I have secondary EM. Course they can’t find out what’s causing my SFN, but Mex still helps. I take Lyrica and Mex and still flare but nothing like I used to.
What are conditions are they looking for with the blood, sweat, and emc test. I have an appt with my reumatologist soon to discuss what my dermatologist said is EM. I would like to know what to ask for as far as testing goes. What is an EMC test?
Looking at my results now. The blood tests are looking for any abnormalities that might indicate something else is going on (Myleproliferative disorders came up but I think there are others). The blood tests they ran on me were:
Thyroid Function cascade
Creatinine level (kidney function)
Complete Blood Count
Liver Enzyme (AST) level (Liver Function)
Alanine Aminotransferase Level (Liver Function)
Oops, EMC was a typo. It’s EMG. If I remember correctly, that was to check for large fiber neuropathy (I think?) and the thermoregulatory sweat test is to detect small fiber neuropathy.
Gotcha, thank you! I will make sure my reumatologist checks for neuropathy as I believe I’ve had all the other tests already.
How long did it take to get into the Mayo Clinic?
I called for the first time last October (2020). They told me the waiting list was almost 2 years long and they would contact me when they had a spot available. I said, okay, put me on it. I called again in March to see if I could get an update on where I was on the list and left a message, and they called me back a few days later (in the middle of my class) to say that they had an opening for the end of May.
I’m young (21) and so this may have affected how fast I got in because they know I’m at university and need to be seen during the summer, but I have no idea.
Don’t know if you ever went to the MAYO clinic. Here’s some quick thoughts. If you don’t have a major problem with EM the sweat test may not be bad. But some tests that add heat to you’re feet to determine if you have EM are viewed as TORTURE by doctors and they won’t do it. I don’t know if that helps much. But heat in a pan of water triggering a flare can be done by you and you will know it’s a flare and stop it when you wish. The sweat test i believe is from some early comments from pre-2005 or so about EM not allowing people to sweat as much and get rid of heat. That really is not much of an issue I think for EM. There may be changes in the skin that affect the sweat glands, but it seems to me the sweat test is a waste of time. As for the MEXILITINE, it’s a good option for some, but often may not be given unless the genetic variation and primary EM is diagnosed. One can get the treatment without the genetic test to see if it helps, but it’s important to note a couple of things. First it’s very rare to have it as a genetic version so the chances are almost zero you have primary EM, most people don’t. Second those who have the genetic defect well only 20 percent seem to get help from Mexilitine, but that is still a pretty good result for those looking for relieve. Lastly that heart or old heart medication is going to be effective only in cardiac doses, which means the dosage level will be high and has to be tested in the hospital over three days to make sure they don’t stop you’re heart and you die form an overdose of the heart agent. And you can’t be on opiods when they do that so you’re EM if it’s constant and under the constant need of opioids is going to be a challenge to treat in the hospital because you have to be wedded off opioids and suffer possible pain flares without pain medication because the opiods and the heart medication taken together can kill you.
So those are some things to consider. Additionally things that are used to trigger and test you’re nerves may trigger flares, so be ready for that. My mom has some rare nerve issues apparently and had PHANTOM PAIN shocks in the areas where she had nerve velocity tests for ten years. And she complained about that from time to time and her neurologist was very concerned when he heard of that. But we didn’t do any followup and we don’t go to him anymore although he was excellent. That is due to the war on opiods which caused him to reject the double opioid doses of pain medication for her to take. He was afraid of the risk of death and although we are careful not to do overdose he was to afraid of the risks of the baseline of opiolds he actually helped setup. So we left his care and go to an MD that can continue the high, but now lessoned doses of Opioids we’ve worked down toward.
The Mayo clinic sounds interesting and some have said they went and didn’t get much there. EM is a rare disease and you have some kind of mixed form of it in my opinoin or a flare version that is only partially affecting you’re nerves. The Reynards ironically is almost the opposite of EM and some say the drugs they get almost push them that way nerve wise to get them relief from EM. So some wonder if drug side effects to lesson or reduce nerve activity cause a numbness of their nerve disease and gives them cold hands, feet, etc. Environmental chilling always seems to resolve EM symptoms temporarily. Is this from cooling alone or slower nerve activity? Who knows, but this could trigger Reynard like symptoms. Some it seems who have "mixed symptoms of more than one neuropathy, which is MY OWN OPINION, not a medical opinion. seem to benefit from early pain treatment options like Asprin tramadol theraphy. Others don’t I think some “nerve repair” suppliments which some say helps them helps them when they have mixed neuropathy or perhaps diabetic EM kind of ailments, but I don’t think those things help a more PURE BURINING ONLY EM person at all. This from just what I’ve seen on some boards. But I don’t have any doctor who has validated this observation it’s just a guess by a caregiver.
So this is some of the stuff I’ve seen or read about and seen with my mom. You’re condition is likely not as bad as hers. I’d suggest being careful with any nerve related medications that can cross the blood brain barrier. Some of them have irreversable side effects and if you take any of them and experience flare side effects that can mean they may be damaging and advancing you’re EM. Be safe out there and try not to do things that may make it worse.