I just moved to Florida (Gulf side near Tampa) and need to try to find a doctor who's heard of EM - anyone know of one?
Hi Libby,
I live on the east coast of Florida and have been recently diagnosed wiith EM on April 2nd 2012 by Dr. Devon Rubin in the Mayo Clinic of Jacksonville Florida.... He is Very, Very knowledgeable about EM and knows very well about the current studies being done as well as the Erythromelalgia Association and all current treatments.... Hope this helps.... My current Neurologist at Florida Health Care Plans of Florida is taking over and treating my symptoms and also has knowledge about EM But did not want to Diagnose me without conformation from the mayo is Dr Mary June Derbenwick.... She had said it's such a rare condition that she needed them to confirm it, But I found that the only person I know of that knows anything about it in this part of Florida so far is Dr. Devon Rubin.... Your results may vary on the West Coast of Florida. But keep this in mind, Living here In Florida there are very very few Docs that even heard of it... Just be aware of that...
BTW: My symptoms have not been helped at all so far with any treatment so far and am still in constant flare...
Best of luck to you..
Just curious do you have Primary or secondary EM?
Thanks, Tollie
Unfortunately I have Primary EM, Dr. Rubin did not label it as one or the other in his notes and only diagnosed it as EM, But he did note that there is no family history and did extensive blood work up while I was at the mayo checking for any Autoimmune disease and all came back negative, So it's not secondary to anything.... It is worthwhile to note that I have very high arches and have had severe ankle joint pain in both feet along with the burning of EM...
Toll said:
Just curious do you have Primary or secondary EM?
Thanks, Tollie
jagmanss said:
Hi Libby,
I live on the east coast of Florida and have been recently diagnosed wiith EM on April 2nd 2012 by Dr. Devon Rubin in the Mayo Clinic of Jacksonville Florida.... He is Very, Very knowledgeable about EM and knows very well about the current studies being done as well as the Erythromelalgia Association and all current treatments.... Hope this helps.... My current Neurologist at Florida Health Care Plans of Florida is taking over and treating my symptoms and also has knowledge about EM But did not want to Diagnose me without conformation from the mayo is Dr Mary June Derbenwick.... She had said it's such a rare condition that she needed them to confirm it, But I found that the only person I know of that knows anything about it in this part of Florida so far is Dr. Devon Rubin.... Your results may vary on the West Coast of Florida. But keep this in mind, Living here In Florida there are very very few Docs that even heard of it... Just be aware of that...
BTW: My symptoms have not been helped at all so far with any treatment so far and am still in constant flare...
Best of luck to you..
I've had EM for two years now and so far the only thing that helps me is Gabapentin. Give it a try, it may help you for the pain.
Thank you so much for this reply! Unfortunately, I am now an uninsured American (flat-out denied for pre-existing conditions), so I'm not going to be able to get to these doctors any time soon, if ever. Would you be able to tell me any of the questions you were asked? I ask this because the most recent doctor I saw said he thought it could be EM or RSD and he didn't look any further into it to tell the difference. Did you have any tell-tale symptoms that helped Dr. Cheshire be sure that you have EM and not RSD?
kb904 said:
Hi Libby, I live in Jacksonville, FL and was also diagnosed by Mayo Clinic in Jax. I had many, many tests ran and had met with Dr. Figueroa. He seemed very knowledgeable and had studied under Rodchester Mayo doctors who specialized in EM. However, he left Mayo before I could get a final consult. Instead, I met with Dr. Cheshire who was extremely thorough in his interpretation of all of my test results. I believe Dr. Rubin performed my EMG at the time they thought it was RSD. I remember him asking me some key questions and that he said it sounded like EM and he was right!
After my diagnosis, I now go to Dr. Shirley Hartman at Mandarin Wellness Center to manage and treat my EM. She is wonderful. Dr. Hartman really cares about her patients. She takes the time to research and really listen. Your initial visit is 3 hrs and follow up appts are an hour so you are not shuffled out quickly as I've experienced with doctors in the past.
I've also found it important to take control of your health. I have a binder with tabs that contains all of my tests, Mayo consults, TEA info, info from Dr. Hartman, EM research and take it with me to any appt I have. I also prepare questions and write them down or even bring someone with me to be a 2nd set of ears. I wish you the best of luck in finding the perfect doctor for you!
My issues began after a foot injury where A podiatrist put my foot in a boot for 3 weeks. When I took it out for a follow up visit, I couldn’t move my ankle or toes at all and there was a discolored mass of veins at the injury site. He believed I had RSD and sent me to physical therapy which did not help. I started to experience sharp (knife stabbing) pains in that area and my leg and foot were very cold and then later became very hot only in the injury area. I couldn’t walk and was in despair. He wanted to send me to some pain management place. My coworkers recommended I see an FSM (frequency specific microcurrent) practioner and I did. She worked with me 5 days a week for about 3 mos. I no longer felt that pain, slowly gained movement in my ankle and toes, and learned to walk again. With that said, I think I may have had RSD.
My EM symptoms came on gradually after all of this. They were different. My entire foot would turn bright red and swell now and go up my leg. It started in my injured foot first and slowly spread to the other foot. Heat really set my symptoms off. I have to be in a cool environment or I’ll flare. One of the main differences is that I get relief by elevating my feet and cooling them with a fan. Walking or stress can trigger flare ups. I always crank the AC
on my feet in the car. I take a shower in a shower seat with my feet elevated. I sleep with my feet elevated and a fan blowing on them.
A good resource is the TEA website: http://www.erythromelalgia.org/Home.aspx . I would read through the website. There is also a brochure you can print and take to your doctor. Also, read all of Dr. Cohen’s articles: http://medicationsense.com/erythromelalgia.html. I would print them and take those, too. He mentions different medications that have helped different people. Hope this helps.
Hi!
I live in the Jacksonville, Florida area. I was diagnosed about 2 years ago by Dr. Russo at Shands Neurological. I follwed up with a second opinion at Mayo and received the same diagnosis. Dr. Russo is currently treating me and he is excellent. I take Lyrica, aspirin, magnesiumn, alpha lipic acid, B-12, and I use Bio-Freeze as a topical for major flares. I have a flares every single day. Some days they are more severe than other days. Especially during the summer. My EM is starts at my ankles on down the rest of my feet. I only wear sandals or flip flops. AC in the car always on my feet, fan on my feet at night, cold showers, elevating my feet in the evening and absolutely no blankets or even a sheet over my feet when I sleep.
My EM is secondary to small fiber neuropathy.
I have found that limiting my carbs helps a little. Lately my feet swell so much that the surrounding skin pushes on my big toe toenails causing them to grow inward resulting in ingrown toenails. I was wondering if anyone else has this problem and had any suggestions to deal with it.
Hi Ruacorefan,
I live in Jackonville, too. I had no idea someone in this group lived so close by! This is my first summer dealing with EM and it has been challenging. I notice when I walk too far in the sun and extreme heat, I start tingling, then itching everywhere, almost stinging. Once I get into the AC, it starts to slowly go away. I have no idea what this is. As far as swelling, I swell when I stand too long or walk short distances. The only thing I know to do is elevate my feet above my heart. I also run microcurrent which seems to always help. We met with 2 clients today (I usually work at my desk, stay in the office) and I walked the length of a football field or more. It felt sooo good to be walking again. I started to forget about the pain the more I talked and interacted with everyone. I felt normal for once. Now I am home with my feet elevated and a fan and microcurrent hoping my swelling goes down quickly. 
There is another lady that lives in Pona Vedra who also EM. Also another in St. Augustine. That makes 4 of us in the area.
The last two days have been killer for me. Right now I have my feet propped up and am lying down trying to get through a flare. I started back to work this week ( I work for Clay County School District).
Unfortunately I am on my feet a lot at work. I prop up my feet whenever I flare at work even if it is for only 5 minutes. I also keep Bio Freeze in the fridge at work and use it when a flare is coming on. It helps. My flares are just intense burning. Feels like someone poured gas on my feet and lit a match.
My feet get so red that my students think they are sunburned.
Have you read anything about Micro Vas therapy. I am looking into it. I am willing to try anything at this point.
Makes 5 of us in the area.... I have EM and Live in Palm Coast. I was the first above to post to this thread..
jagmanss said:
Makes 5 of us in the area.... I have EM and Live in Palm Coast. I was the first above to post to this thread..
Sorry I missed that. Amazing that there are five if us in the area. My doctor at Mayo is Dr. Kennelly. She was extremely good and ran just about every single test under the sun. I continue to see Dr. Russo at Shands as he was the one to give me my original diagnosis. He told me that I was only the second patient he has had with this condition. He is very good about doing research on all the latest info on EM and spends a great deal of time with me during office visits. Dr. Kennelly spoke very highly of him.
I have been wanting to organize a local support group for EM but until recently didn’t feel there were enough folks locally to create one. If any of you would be interested in getting together and meeting please let me know. I would love to meet other flip flop wearing folks like me. We can share what works & doesn’t work for us and how we cope with this crazy disorder.
That sounds like a great idea. I would be interested in starting a local support group. Let me know what you had in mind (as far as the details).
I looked up Micro Vas therapy and it sounds very interesting…I wonder if anyone has used it for EM. Let me know what you find out.
How long have you been working/standing on your feet? Walking all that distance Friday did me in! My feet also get very red and it moves up my leg. My knees started turning red hot, too. Saturday was rough. I ran FSM all day. I’ve been using FSM for almost a year now. I believe I started out with RSD and wouldn’t be walking right now and in severe pain without it. FSM has different frequencies for many different ailments. I run many programs including foot trauma, PNP w/ capillaries, small fiber neuropathy, muscles/arteries, etc…I even have a sleep program on there, programs for stress. Here is a website that summarizes some of the issues it treats: http://eoghanwhelan.ie/treatable-conditions/
kb904 said:
I thought about maybe meeting somewhere for lunch. Keep it informal and see how it goes. I think it would be great to just meet others suffering from EM and talk. What ideas do you have? Would love to hear your thoughts.That sounds like a great idea. I would be interested in starting a local support group. Let me know what you had in mind (as far as the details).
An informal lunch on a Saturday sounds good. Maybe an early or late lunch so we dont have to stand and wait. I’m not sure where everyone would be coming from. Would a restaurant at the Town Center be a good meeting spot? I’m open for suggestions.
I think the Town Center would be good. Lots of places to eat and it is probably the most centrally located spot for most of us.
I am located in Middleburg in Clay County. So it is about a 35 - 40 minute drive.
What day of the week is good for you? Saturdays are best for me but Sunday afternoons work as well.
If anyone else in the Northeast Florida area is interested please let me know if you are interested and what day of the week works for you.
Carmen
Saturdays are best, but Sundays work as well.
How does Saturday August 25th work? Late lunch around 1:30? Let me know.