Going to Dr. Mark Davis at Mayo, in Minnesota, in May. He is one of the two doctors I have found in the nation who specializes in EM. Jay Cohen is the other.I have a Dermatologist at UAB who is not familiar with EM but has a personal interest in rare diseases and is going to work closely with Dr. Davis and his findings. Please pray for success and relief. It is affecting my performance at work and I loooooove my job. Will be sharing EVERYTHING I learn about treatments on all sites I can. There was a girl that posted she knew a dr. in Alabama, but can’t seem to find her on the site now. Any suggestions? Happy Easter! Karen
You are in my prayers, Karen. I hope Dr. Davis will be helpful to you. Keep us posted.
Thank you Karen for keeping us informed with all you learn being fortunate enough to be seen by one of the few specialist on EM. You are in my prayers. I hope you are able to get some answers that help bring you relief.
Take care
Alina
You are in all our prayers Karen. God bless x
Thanks so much!! It’s been tough lately. It seems my EM has progressed more since Dec. than over the past 5 years. I have decided to wean myself off the lamictal to see if that has contributed to the progression. Have any of you taken it, and, if so, how was it? Thanks.
Did you go to Mayo yet? I live 3 blocks away!
Hi I have a son who have the condition and he's pretty bad with it for almost 3 years, how you contact the Dr. Davis in Mayo Clinic, I would like to take my son there too to see If he can give hime someting that works better and he can lived a normal kid life.
I just Googled him and he looks very promising! He also has said that the Lidacaine patches are a good type of treatment. I got them last week but I canot figure out how to use them effectively on my feet because they move around when you try to walk on them. I am kind of at the end of my rope and I don't even have it as bad as others. I have to keep working full time and I couldn't stand to stay home anyway. I can't be by myself because then all I do is worry or be sad or angry,
I don't know IF i have EM or if this is just from my eating disorder and after over $40,000 no one knows and I am ready to give up.
Jordy
Hi Karen!
Good luck to you! I actually recently got back from a Mayo Clinic visit in March where I also met with Dr, Davis. He is a very good doctor and I hope that he can help you.
He prescribed two different creams for me to use, but my EM is so finicky and mean that unfortunately neither worked for me. Of course, I keep getting told that my EM seems a bit unpredictable. Ethel doesn’t follow the rules I guess (I’ve named my EM Ethel, ha!).
The people at Mayo are WONDERFUL, and I am sending you good vibes that you get the help you need! Please keep me posted on your progress with Dr Davis. He is very knowledgable.
Keep cool!
Pesto
I waited two years to see Dr. Davis. Unfortunately I was very disappointed with Him. He didn’t have nearly the information (and caring) manner of a Neurologist I saw there. I have forgotten His name.I was told he is a very specialized Neurologist and there were very few in the the country like him. I Am sure it is somewhere in my paperwork. Dr. Davis spent very little time with me AFTER WAITING TWO YEARS. I was also told that I could not call and find out if there were any new treatments. I felt so hopeless. I have prayed for 16 years for help. God is with me, I do trust in Him with all my heart. God bless all of you. We are all here for a reason.
What are the names of the two creams Dr Davis prescribed? As much as I want to, I can't afford to travel to see him. Maybe my local doctor will let me try those creams.
Pesto said:
Hi Karen!
Good luck to you! I actually recently got back from a Mayo Clinic visit in March where I also met with Dr, Davis. He is a very good doctor and I hope that he can help you.
He prescribed two different creams for me to use, but my EM is so finicky and mean that unfortunately neither worked for me. Of course, I keep getting told that my EM seems a bit unpredictable. Ethel doesn't follow the rules I guess (I've named my EM Ethel, ha!).
The people at Mayo are WONDERFUL, and I am sending you good vibes that you get the help you need! Please keep me posted on your progress with Dr Davis. He is very knowledgable.
Keep cool!
Pesto