From what I have "researched", it appears that EM can be underpinned by Myeloproliferate Disorders. have seen soem research that suggests that having EM often is a trigger in diagnosis for doctor to look for MD and MD often occurs after EM (saw one retrospectve study where MD occurred a mean of 2.5 years after diagnosis of EM).
It also appears that those with EM who respond to aspirin "likely" have MD, more precisely Essential Thrombocytosis (ET). Again, some doctors use this as a diagnosis test. In this case, the doctors suggest regular blood checks in case the ET is the underlying condition.
In my case, I am especially interested in people's views / knowledge / experience, as I was diagnosd with EM recently and aspirin appears to give some pain relief more than anything else I have tried - so I am thinking that this means that I have a higher-than-usual probability of having ET.
I know you are looking for answers/help like we all are. I have never heard about the aspirin part - except that a lot of reports indicate that EM occurs in connection with another MD. But what I have never read is how they came to that conclusion. There is no explanation how any doctor ever made the connection between the two and that's why I am still thinking - they are guessing. I also have never seen a report that somebody supposedly had a connection MD and EM, then was cured of the MD and the EM symptoms stopped at the same time or shortly thereafter. Of course ,no matter what, it may not be a bad idea to get checked out. I have seen one article by a doctor who had a patient with EM and after 4 weeks of drug therapy (I think it was something like prednisol...). the EM symptoms disappeared and had not come back for 2 years at the time the doctor wrote about it. He did extensive tests on this patient but couldn't find any other MD.
I may seem a bit stubborn now, but I still have not read how a doctor every linked an MD to EM. How does a doctor proof it? Is there a red threat visible, an arrow pointing? Just because I have EM and then I am checked out and a doctor finds some other health issue is not proof that the 2 are connected - at least not in my book. We know that as we get older we are more prone to health issues - a lot of them go unnoticed for quite a while sometimes. When you get checked out because you have EM the discovery may be so much earlier than it normaly would have been: actually giving you a better chance for a positive outcome.
Best wishes - take care
You are right - awareness and understanding is the first step. I wish a big TV show could be made aware and get interested enough to put EM on the tube - like D. Phil or others like him. Because for us it is so frustrating to not only have a painful and for some people almost crippling disorder but to feel helpless and sort of like left to our own devices. I still haven't found a doctor who really knows about EM and the others are of no help. They tell me something like yea I know what that is and then they ask me what can be done about it.
I have seen several articals where they link MD with EM. Not read them all throughg recently though but thought I'd post a couple for you to look through.!
Thanks Laura - I guess I better find a doctor real quick and get checked out - maybe I have a horrible disease - other than EM. On the other hand - maybe I just don't want to know.
I can contest to this theory. I have a MD disorder called monoclonalgammapathy of undetermined specific (MGUS). Yes it is secondary to my EM. You will have to google this MD disorder. Very interesting.
Oh yes the lab test we did that showed this was called SPEP . It stands for a long name but your doctors should be familiar with this test.
Almost every article I've read on EM on any reputable medical site (Rare Disease Org, Mayo clinic, Med
Scape, Johns Hopkins, etc.) has related, not every, but many cases of EM with myeloprolific disorders such as thrombocytosis. That's why EM is broken down into "sub-types"
They don't seem to know "why", but then they also don't know "why" for EM itself, so how could they have a clear sense of the connections?
Jane, I have asked the same question ever since I heard that EM should / can have another underlying disease Where is the proof of connection? Nobody could tell me. I wish somebody could tell my why some people find relief in taking plain ordinary painpills like Aspirin or Ibuprofen and others don't - like me. I was already on 12 Aspirin a day (for pericarditis) when EM finally showed its ugly face by a burning pain in my hand. Maybe if I ever go back to my Neurologist he can explain it because so far I can only guess that I have neurotic pain and the others have a *regular* pain. But again - there is the question - WHY ? Because we all have the redness, the swelling, the feeling of heat and actually the effected parts of our body have a higher surface temperature during flares. I measured a difference of 13 degrees on my hand using an infrared thermometer. I wonder whether there is somebody here who has EM but NO other health issues. .
Take care Jane
Domina, I think there's plenty of people who have EM with no other known health problems (idiopathic EM, or without known cause). It's the most common type. Also, the medical folks say aspirin works usually ONLY for patients who have the sub-type of EM with a myeloprolific disorder. That's because the disorder very often involves too many blood platelets, and aspirin slows the production of platelets. If aspirin does nothing for you, odds are your EM is not of this sub-type.
That's why I think it does matter that we understand all sub-types. The fact that no connections can be proven (yet) between EM and several different other conditions doesn't mean the connections aren't there, when they are often found together in the same patients. Finding any hidden connections brings the possibility for cures or at least more effective treatments.
So far, EM is only a description of a set of symptoms, not an explanation of why for those symptoms. Research is the only path to finding out why. Different causes can give the same symptoms, just like a stomach ache can be for many different reasons. Giving the name EM to this set of symptoms is what brings in money to get the research of "why" done.
Maybe your neurologist said you have "neurological", or nervous system, pain, not "neurotic" pain. We all know your pain is VERY real. I have only recently found out I have EM, but already I have times when I feel hopeless. And it sounds like you have had to live with it for awhile now. I am so sorry for that. I hope the best for you.
Take care also,
Thanks Jane - of course I didn't mean *neurotic* but I just mix up all these strange new words sometimes. Pain was always just plain pain for me, never thought much about it. I don't really know for how long I have had EM. It could be over a year already or it could have just started 5 months ago or I could have inherited it. Without a knowledgeable doctor to talk to I will never know. It's just that knowing EM has a lot of different symptoms and looking back to my youth and to the strange things my father was sometimes *complaining* about I have to wonder. Real pain didn't start until June of this year.
Btw are you on FB in the group called Erythromelalgia - A helping hand ?
Time to curl up on the couch with a cold gel pack and a moist cool washcloth handy.
I don't know what FB is? My mom always complained of hot tingly red feet. They say even the genetic type can come on later in life, so who knows? A gene test would show, but I can't spend that kind of money!
Here's to the researchers having great success in the near future!
FB = Facebook. Lauren from Scotland started a group there for people with EM. It's been quite interesting
to exchange information and have questions answered.
My father complained about the kind of skin-sensitivity that I am experiencing with EM and the increased body heat
at night and I had what I called my *sun allergy* on my chest every spring/summer and that is exactly what EM looks and feels like. I thought it was a sunburn, but the skin never peeled like it should have. It just burnt and itched. Gene Test? - Only if knowing would make a difference in treatment or offer a cure.
Ina, thanks for the FB info - I'm not on facebook, but thanks! I don't know if knowing you had the gene mutation would help in treatment or not, but if I find anything out (I'm definitely trying to read a lot) I'll let you know.
Jane (my real name)
I had the genetic testing to rule out whether I may have passed it onto my daughter. It can also be useful to know for research purposes. My em is secondary, still waiting to find out what it’s secondary too.
Would it be inappropriate to ask, if you care to say, how much the test costs? I hadn't thought about the usefulness to research in seeing if you have the gene mutation! Not to mention, the more I think about it, KNOWING if you do or not.
Of course it’s not inappropriate to ask but sadly I don’t know because I had it done on the NHS in the UK. The NHS is great when they get things right but sadly being on the back end of one of their cock ups at the minute I’m not feeling particularly lucky. I also had MRI brain and spine tests at same time and they failed to give me results. After fighting 16 months I finally got the medical report that no dr had looked at which said I satisfy the McDonald criteria for dissemination in space (MS). I do think that having knowledge of your EM type is important, for treatment as well as risk of passing it on to children. My specialist said he thought my EM was secondary but he ordered the tests just to put my mind at rest.! I hadn’t thought about the implications of type until another dr suggested it.
How long did you try asprin for before you knew it was doing something for you?
I would like to give it a trial run as I haven't used it yet but unsure how often to take, how much and for how long for the trial run.