I've exhausted my resources in Springfield, Illinois area and am now looking for a doctor who could help get some relief for my EM symptoms. Was diagnosed last February by a dermatologist locally and she seemed to sincerely want to help me but it appears that has changed. I've been told to try and look for a neurologist/pain specialist so that's what I'm going to try next. We don't have many here in Springfield but I see there are several in other areas. Has anyone had experience with a doctor here in Illinois or any if you've had experience with trying to use pain specialists to help with the intense EM pain? My problem is more with the ears than with the feet like most people have and no one seems to know what to do with that. Thanks!
Hello Janna. Welcome to the group.
I know you don’t have your main problem in your feet but perhaps this place could advise you:
http://southernillinoisfootandankle.com/document_disorders.cfm?id=254
I will keep on searching
I expect you have already done all the research and I am merely being irritating, but is this any use: http://my.clevelandclinic.org/staff_directory/staff_display?doctorid=16407 Erythromelalgia is on their list.
Janna. Please go to All Discussions and type Illinois into the search box.
Hi Janna, I sent you a friend request so I could message you about a pain specialist I have recently seen in the Chicago area. I have just begun a treatment path with him and too early to report any success. I can let you know more if you are interested. I will post info to the group once I determine if this doctor will be helpful.
I checked this out and at first, I thought it might be a place to call but as I read the information regarding Erythromelalgia, I'm not sure they would have any answers, especially after I read the last paragraph. It still might be worth a call to them just to make sure. Thank you for sharing.
Nel said:
Hello Janna. Welcome to the group.
I know you don't have your main problem in your feet but perhaps this place could advise you:
http://southernillinoisfootandankle.com/document_disorders.cfm?id=254
I will keep on searching
I appreciate you sending me the link but Ohio is quite a distance from where I live but I'll keep it in mind.
Nel said:
I expect you have already done all the research and I am merely being irritating, but is this any use: http://my.clevelandclinic.org/staff_directory/staff_display?doctori... Erythromelalgia is on their list.
Thank you for sharing this information and yes, I would be interested in keeping up to date on how things are working for you.
snowshoe03 said:
Hi Janna, I sent you a friend request so I could message you about a pain specialist I have recently seen in the Chicago area. I have just begun a treatment path with him and too early to report any success. I can let you know more if you are interested. I will post info to the group once I determine if this doctor will be helpful.
OK. Thanks! I did that but it only had about 7 responses and 2 were mine. I'll keep that in mind to do from time to time. Is there a way I can find out if there is anyone else in Illinois that are members?
Nel said:
Janna. Please go to All Discussions and type Illinois into the search box.
Small World, Janna....I live in Bloomington, Illinois & have been thinking about visiting SIU School of Medicine in Springfield there, for possibly for my burning feet &, too, other ailments plaguing me...Have you tried contacting them?....I know, too, they don't accept certain insurances...I was born & raised near St. Louis, maybe, you will find something better there, being I think it's bigger city & more doctors with a lot of teaching hospitals there, like Washington U & Barnes hospital..Though quite a drive with lots of traffic & to contend with to get there,,.So far, my primary doctor thinks I have a vascular problem in my feet though the burning of the tops & my ankles at night does me no favors & not wearing socks for not very long,,at least Summer it's almost here now were we reside...And this & my purple red feet get some help with diluted watered-down antacid & vaseline combined that I apply directly to the burning area...When you have EM or symptoms that are common with this, you sure have to really seek out something to get relief.....Even if that means trying things on your own...As, I really don't think there is a cure. at least not yet..Also, my face , I believe I have problems there with a burning chin a lot & face.. too quite a lot & not sure if that is EM or rosecea..Benadryl seems to help that , but can make one sleepy..My hands are affected somewhat, too, though not as bad....And don't want to resort to prescriptions or tranquilizers. At least, not yet.
Hi Janna, yes there is. If you go to the members section and select 'advanced search' you can put Illinois in the city/state box and that will bring other members up in your area.
Janna said:
......... Is there a way I can find out if there is anyone else in Illinois that are members?
Thanks! I did that but unfortunately, it came up with no members in my area or the surrounding area either. :(
Jules said:
Hi Janna, yes there is. If you go to the members section and select 'advanced search' you can put Illinois in the city/state box and that will bring other members up in your area.
Janna said:
......... Is there a way I can find out if there is anyone else in Illinois that are members?
I wonder why it didn't pull your name up when I tried to search for members in my area, including Bloomington. That's not too far away and I have some friends who live there. I've talked to several different doctors, including ones at SIU (dermatologist and others) and have also seen an ear specialist down in St. Louis at Washington University, but so far no one has helped me. You should check it out since everyone's symptoms and situations are different. Good luck and hope you find someone to listen and help you.
Caressa said:
Small World, Janna....I live in Bloomington, Illinois & have been thinking about visiting SIU School of Medicine in Springfield there, for possibly for my burning feet &, too, other ailments plaguing me...Have you tried contacting them?....I know, too, they don't accept certain insurances...I was born & raised near St. Louis, maybe, you will find something better there, being I think it's bigger city & more doctors with a lot of teaching hospitals there, like Washington U & Barnes hospital..Though quite a drive with lots of traffic & to contend with to get there,,.So far, my primary doctor thinks I have a vascular problem in my feet though the burning of the tops & my ankles at night does me no favors & not wearing socks for not very long,,at least Summer it's almost here now were we reside...And this & my purple red feet get some help with diluted watered-down antacid & vaseline combined that I apply directly to the burning area...When you have EM or symptoms that are common with this, you sure have to really seek out something to get relief.....Even if that means trying things on your own...As, I really don't think there is a cure. at least not yet..Also, my face , I believe I have problems there with a burning chin a lot & face.. too quite a lot & not sure if that is EM or rosecea..Benadryl seems to help that , but can make one sleepy..My hands are affected somewhat, too, though not as bad....And don't want to resort to prescriptions or tranquilizers. At least, not yet.
Hi Janna
My apologies if I need to brush up on my geography of the US but when I searched using 'IL' I had 23 members come up. I'll get my world atlas out but while I get 'up to speed' if it helps you can re-run the search .... and my apologies if I'm totally off the mark on where you are. I promise I'll get going on my homework ;-) Jules
Janna said:
Thanks! I did that but unfortunately, it came up with no members in my area or the surrounding area either. :(
Jules said:Hi Janna, yes there is. If you go to the members section and select 'advanced search' you can put Illinois in the city/state box and that will bring other members up in your area.
Janna said:
......... Is there a way I can find out if there is anyone else in Illinois that are members?
No need to apologize. You are just fine! I just re-did the search like you did by just using IL and it did come up with 23. Thanks for pointing that out. Now if I just knew how many are dealing with what I have. :)
Jules said:
Hi Janna
My apologies if I need to brush up on my geography of the US but when I searched using 'IL' I had 23 members come up. I'll get my world atlas out but while I get 'up to speed' if it helps you can re-run the search .... and my apologies if I'm totally off the mark on where you are. I promise I'll get going on my homework ;-) Jules
Janna said:Thanks! I did that but unfortunately, it came up with no members in my area or the surrounding area either. :(
Jules said:Hi Janna, yes there is. If you go to the members section and select 'advanced search' you can put Illinois in the city/state box and that will bring other members up in your area.
Janna said:
......... Is there a way I can find out if there is anyone else in Illinois that are members?
What I'd suggest is that you look to see who is nearest to you and send them a friend request with a message. If you want to do your homework on each member first if you click on their name from the list it will bring up their profile pages as well as their posts so you can see who is most recently active. Hope this helps.
Jules, I'm not sure where your last message is but I appreciate the idea and will give it a try when I get a chance. Thanks for the suggestion.
Janna said:
No need to apologize. You are just fine! I just re-did the search like you did by just using IL and it did come up with 23. Thanks for pointing that out. Now if I just knew how many are dealing with what I have. :)
Jules said:Hi Janna
My apologies if I need to brush up on my geography of the US but when I searched using 'IL' I had 23 members come up. I'll get my world atlas out but while I get 'up to speed' if it helps you can re-run the search .... and my apologies if I'm totally off the mark on where you are. I promise I'll get going on my homework ;-) Jules
Janna said:Thanks! I did that but unfortunately, it came up with no members in my area or the surrounding area either. :(
Jules said:Hi Janna, yes there is. If you go to the members section and select 'advanced search' you can put Illinois in the city/state box and that will bring other members up in your area.
Janna said:
......... Is there a way I can find out if there is anyone else in Illinois that are members?
Found your message! :) And yes, that does help. Thanks!
Jules said:
What I'd suggest is that you look to see who is nearest to you and send them a friend request with a message. If you want to do your homework on each member first if you click on their name from the list it will bring up their profile pages as well as their posts so you can see who is most recently active. Hope this helps.
Janna, I would really advise you to call & make sure, that they deal with EM conditions at Washington U, etc in St, Louis. Most neurologists don't deal with that..People have spent a lot of useless time & money searching for answers about what they consider EM...Just keep us informed if you do find a doctor there in St. Louis, that does you good, as I for one would like to know & possibly check he or she out, as would rather drive to St. Louis, then to Chicago area....I'm looking to be tested for small fiber neuropathy in the near future & appreciate what a member put out on that, just now., as I think that might play a part in EM symptoms....Also, there is one place that is known for testing patients for EM & doing the best to treat patients with this from a doctor who has a lot of expertise on this at Mayo Clinic & saw a video about that on youtube ....I know that is a far distance though it might help you out.. I guess, I have that option in Normal, Illinois where my primary doctor is located, if she gets so frustrated with me on my complaining about my burning feet & OSF, it is called, they are in partnership with Mayo clinic...If they find something that they consider out of their realm of trying to treat..I think they can refer a patient there....Though, I think I would still have to pay for my transportation to & from & maybe, my insurance will pick of the medical..My EM is better than it was....So, I haven't even asked my doctor if she would consider a doctor at Mayo to get a referral from her, as of yet. Also, there are groups on Facebook for those suffering from EM or symptoms that are similar & have or haven't had a confirmed diagnosis ( and believe there is a blood test that verifies this, but not 100% certain)
Caressa
So, sorry, you have it with the ears, Janna I hope for you the best & most likely, searching for neurologist/pain specialist might be wise or if worse comes to worse, Mayo Clinic....My eyes aren't the greatest & miss sometimes what people type & read your inquiry again & saw yes, your ears...That must be terrible burning like that ....I hope this takes, found this on the Internet. And hope you get pain relief that is best for you & be able to cope better..Hope it doesn't become chronic.....I will pray for you