Progression of Symptoms

Hello Everyone. I'm new to this site so I'm sorry if I'm bringing up old news. I have a couple of questions at the moment. First, do symptoms always progress and get worse, or are some people lucky enough to plateau and not get the really bad pain? Second, my doctor has told me I'm on my own and that he won't be looking for updates or new information on this condition because he doesn't have time. But he did suggest that I find out if I'm one of those patients who has the EM gene. I guess he felt I could possible get into some trial or something. Does it matter if we have the EM gene or not? And are we really on our own? Thank you for listening.

Wow! What a terrible response from your doctor!!

Do you live in a rural area? My parents live in a rural area with few doctors and choices and I'm always appalled at the treatment that they receive from their health care professionals. (I live in Houston where I have a ton of choices and if someone talked to me like that, it would be the last time they saw me!) I am very lucky (and maybe spoiled) to have such choices.

I would tell that doctor see you later there are a lot of doctors who will try to help. I am not sure where you live but I had a gene test buy a dr. in germany it came back negative for gene mutation. which is good maybe it will not be passed on to my children. My doctor keeps trying different medicene. And I try to remain positive somthing wiil work

Dale, do you mind telling us how much the gene mutation test cost you (and do you live in Germany, or was the test sent there from a doctor in another country)? I'm interested in having it done (I live in the U.S.) but I was under the impression that it is terribly expensive. Thanks!

Dale said:

I would tell that doctor see you later there are a lot of doctors who will try to help. I am not sure where you live but I had a gene test buy a dr. in germany it came back negative for gene mutation. which is good maybe it will not be passed on to my children. My doctor keeps trying different medicene. And I try to remain positive somthing wiil work

my doctor Dr.Ringle contacted Dr.Ingo Kurth in germany He said he would do it for free if I consented to them using my blood for research. It started out at 4700 eoros then 1000 erous then he said it would be free. My primary doctor drew the blood for free I paid fedex to overnight it to Doctor Ingo I paid for that which was 90 dollars I live in colorado.So I do not no if I just got lucky with having the gene test done for free I feel like it.but Doctor Ringle could not find nobody in the great old USA willing to do it pretty sad.

Dale’ do u know if Dr kurth is still willing to do the genetic testing even if its not for free?I’m interested in knowing if I have that form of EM even though I’m fairly positive I don’t. I had the hardest time getting finding anyone that would draw my blood and send it over to Dr kurth in the Netherlands when they were looking for volunteers for the trial they are running.

I agree that is a horrible response from any doctor and although I have never had any of the Dr"s I’ve seen say that to me, I feel like they might as well as been what they said to me. I have been searching for four years since I was diagonosed in hopes of finding a Dr that knows anything about this disease or even one that is wiling to venture out of their comfort zone to help me find some way of approaching disease. So far no luck

I will give you his phone number and email adress and hope he is willing to help

phone# 49-3641-934877

EMAIL ■■■■■■■■■■■■■■■■■■■■■■■■■■

remember he is 8 hours ahead of mountain standard time.

good luck

I’m not sure about progression either… I started off with just constant pins and needles in one toe and ended up with it in both lower legs. I also got the numbness and burning too. Mine seems to have spiralled last year after being poorly and I’ve had to double my medication, it also spread to my hands around this time… I am still able to leave normalish life with working full time and run a home. I am also able to do some exercise in the form of cycling classes although this is really hard now things have gotten worse. I also sleep most of my spare time too.
I’m really sorry you are not getting support from your doctor. Are you on any treatment plans…?

Thank you so much, going to try to reach him first thing tomorrow. Thanks again



Dale said:

I will give you his phone number and email adress and hope he is willing to help

phone# 49-3641-934877

EMAIL ■■■■■■■■■■■■■■■■■■■■■■■■■■

remember he is 8 hours ahead of mountain standard time.

good luck

I know this probably isn’t the post to do this on but I’m honestly feeling desperate. My burning, which I describe as feeling like someone poured acid on the inside of my skin, is in both feet and both hands it always has been. It is now into both ears and face and has moved down the inside of my throat. My teeth have actually had to be wired into my mouth because I have put so much pressure on them from grinding down on them when the pain gets so bad at times. At this point I have been neurotin but had to come off of it because it made me so drowsy I literally could not function on a daily basis. Just wondering if people out there are willing to share some of the treatments they have found that work

Sorry you are feeling so desperate Laurie… I am on 3000mg Gabapentin daily plus aspirin to thin blood. I do still get flares but nowhere near as bad. I found the Gabapentin really hard to get used to but it seems to have settled somewhat, this being said I often sleep straight after work until next morning.

I had a rhuematoglogist tell me the same thing 7 yrs ago. that was after he agreed with my self diagnosis after many tests to try to rule EM out. He told me. :You are on your own. There is nothing I can do for you. Try going to a learning hospital where they have younger doctors studying rare diseases." That is when I decided to use natural, alternitive medicines & doctors instead.

Sometimes I can stop it from getting worse when I feel a flare coming on like by cooling them down right away. Other times no matter what I do can't stop it from getting full blown out excruciating.

I was always thinking that it's not fair that the studies seem to be for those who have Hereditary EM. What about the rest of us?

Thank you everyone for your comments and empathy. I'm wondering why we are not being tested for this gene. Wouldn't a geneticist do that kind of work? Seems to me there should be some pretty good geneticists in this country. But even if we find we have the gene, does it change the treatment?

I will tell you why money the pharmacy companys say there are not enough of us to justify spending money for research because they could not make there money back that it would take for research. sad but true

If that Doctor could experience the misery of EM for a couple of days he would sure be finding the time to research it. He should at least refer you to someone who has more knowledge of EM, and if he won't then he isn't doing his job.

As to progression - my symptoms started in my toes a year or so ago and have since headed north to well past my ankles. The fronts of my hand and fingers are getting very red too and I am worried that the burning etc will follow. Aged 65 I have been told I have Primary EM.

Dale is right when he says Money is at the root of the problem. Not enough EM sufferers to justify research.

Hope you get the help you need very soon.

I live in a city where there are many doctors and a large medical school, but I pretty much get the same response about treatment because no one knows anything about EM and they don't have time to investigate on their own. HMO's don't pay them much for their time. But my neuro told me that if I find reliable info online (research articles & abstracts) about a particular form of treatment I can send it to him ahead of an appointment and he'll consider trying that treatment for me. I just have to do my own info-gathering for him.

Magnesium supplements (w/Calcium) have helped me the most, but must be taken in the right dose (requires experimentation, 400-600 mg for me per day) and must be taken every single day without fail. I also had a postive response to oxcarbazepine one mild summer.

I do think more research should be done on secondary EM. If 95% of us have the secondary type, and treatment partly depends on finding out what the underlying illness is, then researchers could really help us out by determining what disorders are most likely to cause it. There's very little info on that, and I suspect there's a rare disorder that can cause it (like is suspected in my family) and many EMers are not diagnosed with that underlying disorder yet. Mayo could at least do a records/research review and compile the current data. And they could start with the 2008 TEA member survey that lists the "other disorders" those patients have.

Hi, Not sure if anyone else has this, but I find that mine has been made worse or even brought on my menopause. Something with the hot flashes, which in turn make my hands/feet hot/red/burn even more..... any "woman" experience this??

I am in my twenties but I had an ovary removed in 2009 and went on hormones after that - most notably sketchy thing I tried was the Depo shot - and then, suddenly: EM. During that time I experienced a bad hot flash as a side effect (one of many) of discontinuing the shot.

ebakos said:

Hi, Not sure if anyone else has this, but I find that mine has been made worse or even brought on my menopause. Something with the hot flashes, which in turn make my hands/feet hot/red/burn even more..... any "woman" experience this??

diet!!! a lot of ups and downs for me were from what i ate, and the humidity as well. it takes a LONG and difficult time to know what makes you flare, but i feel that i am finally slowly getting somewhat better. em isnt very well documented because it is so rare, so we are the ones that have to find out what makes it bad. doctors are little help as compared to us coming together to talk about it on here.

keep trying new things and stay strong!! and dont use ice!!!!!!!!