Does anyone know of any doctors near North Texas area? I cant seem to find any doctor that has ever heard of EM in this area. I’m convinced this is what I have. I can not wear socks anymore without causing a flare. Summers here are painful. My concern is if I have primary or secondary. Any suggestions?
Absolutely! When you say North Texas, are you close at all to the DFW area? I live in DFW, and my rheumatologist here is the one who diagnosed me. His name is Dr. Richard Stern with Rheumatology Associates. I see him in his practice's Grapevine location, although I think they have locations in Dallas as well. He listened to me, he believed me, he's very smart and seems to keep up to date with literature, and recognized the erythromelalgia right off the bat. At our first appointment, he had me meet with him in his actual office as opposed to the exam room, so that we could simply sit down and discuss what had been happening with me. While I was talking, he began typing on his computer and started printing out articles for me to read on erythromelalgia. Like I said, he recognized the diagnosis based on my descriptions IMMEDIATELY. During the appointment, he said he was giving me a "working diagnosis " of erythromelalgia, started off with a prescription that he thought might help manage the pain, and encouraged me to read the articles and come back in a month with a list of questions and updates on how the medication was working. Initially, he saw me every single month until we reached a sort of status quo. Unfortunately, I have been unable to tolerate the side effects of any of the medications he has tried (the only one that even worked for the pain was Savella, but it was causing prolonged tachycardia), but he still has me come back every 6 months for status updates. He lets me know if he has learned anything new AND he asks ME if I learn anything new from reading articles or from discussion groups like this. He said as long as it is a medication that he feels is safe and that he is familiar with, he is happy to try. And, if not, he is happy to help refer me to Mayo or Yale Medical School, which I believe are the only 2 places in the country doing active research on EM. He has NO EGO, and will be the first to admit that he doesn't know much more than we do. The difference is that he will actually listen and do the best he can to help, and that makes such a huge difference.
Have you done a web search on "Erythromelalgia Texas"? It may be worth a shot.
This may be a real stretch, but if all else fails you could try a consult with a good geneticist. At least they would have heard of EM. I suspect they'd tell you they cannot test you because they don't have research on EM going on in their office now or their lab isn't certified (like Yale's isn't), but they may be able to make some treatment suggestions or referrals for you. I don't know Texas geography, but I've heard Dr. Dhar in Houston is good and Dr. Ladonna L. Immken in Austin is good. I didn't hear that from people with EM, but people I heard from have Ehlers-Danlos which often includes very similar problems with thermoregulation, but usually without the pain.
Yes, I am very close to DFW area. This is so encouraging. Thanks for info.
Emily Williams said:
Absolutely! When you say North Texas, are you close at all to the DFW area? I live in DFW, and my rheumatologist here is the one who diagnosed me. His name is Dr. Richard Stern with Rheumatology Associates. I see him in his practice's Grapevine location, although I think they have locations in Dallas as well. He listened to me, he believed me, he's very smart and seems to keep up to date with literature, and recognized the erythromelalgia right off the bat. At our first appointment, he had me meet with him in his actual office as opposed to the exam room, so that we could simply sit down and discuss what had been happening with me. While I was talking, he began typing on his computer and started printing out articles for me to read on erythromelalgia. Like I said, he recognized the diagnosis based on my descriptions IMMEDIATELY. During the appointment, he said he was giving me a "working diagnosis " of erythromelalgia, started off with a prescription that he thought might help manage the pain, and encouraged me to read the articles and come back in a month with a list of questions and updates on how the medication was working. Initially, he saw me every single month until we reached a sort of status quo. Unfortunately, I have been unable to tolerate the side effects of any of the medications he has tried (the only one that even worked for the pain was Savella, but it was causing prolonged tachycardia), but he still has me come back every 6 months for status updates. He lets me know if he has learned anything new AND he asks ME if I learn anything new from reading articles or from discussion groups like this. He said as long as it is a medication that he feels is safe and that he is familiar with, he is happy to try. And, if not, he is happy to help refer me to Mayo or Yale Medical School, which I believe are the only 2 places in the country doing active research on EM. He has NO EGO, and will be the first to admit that he doesn't know much more than we do. The difference is that he will actually listen and do the best he can to help, and that makes such a huge difference.
Emily, one other question…did he assess for primary or secondary? Run tests or was diagnosis based on observation and history alone?
Emily Williams said:
Absolutely! When you say North Texas, are you close at all to the DFW area? I live in DFW, and my rheumatologist here is the one who diagnosed me. His name is Dr. Richard Stern with Rheumatology Associates. I see him in his practice's Grapevine location, although I think they have locations in Dallas as well. He listened to me, he believed me, he's very smart and seems to keep up to date with literature, and recognized the erythromelalgia right off the bat. At our first appointment, he had me meet with him in his actual office as opposed to the exam room, so that we could simply sit down and discuss what had been happening with me. While I was talking, he began typing on his computer and started printing out articles for me to read on erythromelalgia. Like I said, he recognized the diagnosis based on my descriptions IMMEDIATELY. During the appointment, he said he was giving me a "working diagnosis " of erythromelalgia, started off with a prescription that he thought might help manage the pain, and encouraged me to read the articles and come back in a month with a list of questions and updates on how the medication was working. Initially, he saw me every single month until we reached a sort of status quo. Unfortunately, I have been unable to tolerate the side effects of any of the medications he has tried (the only one that even worked for the pain was Savella, but it was causing prolonged tachycardia), but he still has me come back every 6 months for status updates. He lets me know if he has learned anything new AND he asks ME if I learn anything new from reading articles or from discussion groups like this. He said as long as it is a medication that he feels is safe and that he is familiar with, he is happy to try. And, if not, he is happy to help refer me to Mayo or Yale Medical School, which I believe are the only 2 places in the country doing active research on EM. He has NO EGO, and will be the first to admit that he doesn't know much more than we do. The difference is that he will actually listen and do the best he can to help, and that makes such a huge difference.
I apologize if my reply shows up several times, but I originally attempted to respond from my phone and I don’t think it went through.
Dr. Stern does check my bloodwork every time I see him to keep me monitored for possible development of myeloproliferative disorders; if something shows up abnormal he will send me to a hematologist/oncologist. So far, it’s all been borderline high, but not high enough to cause concern. He said if it is secondary to a myeloproliferative disorder, it may take years to show up. EM can also be secondary to MS; because of my health history (shingles as a child, Epstein-Barr as a teenager) and also having symptoms of Meniere’s disease (chronic vertigo and tinnitus), I have been thoroughly screened for MS as well, but that was done through the UT Southwestern MS Clinic, not through Dr. Stern. I do not have MS, but because of my history and slight abnormalities with my MRI, the neuro at the MS Clinic has recommended I get repeat MRI’s every few years. But that’s totally off-topic, because that’s not something that would be done through Dr. Stern, since he is a rheumatologist. The bottom line is that I still don’t know if I have primary or secondary. He has sent me to a different neurologist to get nerve conduction study done, but that was normal, so no answers there. From what he has explained to me is that it’s kind of a waiting game. If it’s secondary, the underlying root cause may take years to manifest itself (which is why he checks my CBC every time I see him), and the only tests to confirm primary/hereditary seem to be very specific genetic tests that he doesn’t perform. However he is always willing to refer out to other docs and if I happen to come to him with more info on treatments or tests, he is very receptive. I’m just afraid I’d need to go all the way to Yale or Mayo to get some of those genetic/DNA screenings done, and although he’s more than willing to refer me, I am a stay at home mom of two young kids and don’t have any idea how I’d coordinate something like that (I’ve heard it can be weeks and weeks of appointments and testing). Do you happen to know of more tests that can be done to try to check for primary vs. secondary?