New here. This has probably been asked alot but I’m looking for help for my mom who has been diagnosed with EM. She’s on the waiting list at the Mayo clinic but she’s in way too much pain to wait that long to see a doctor. She has a general doctor along with numerous other specialist that she sees. But none have been able to help. They just put her on gabapentin which is not helping. Her feet flare up in this Texas heat and she ends up in the emergency room just to be put on IV pain meds. She’s so young. It’s hard to see such a strong, active, athletic woman be reduced to a wheelchair. I need help finding her a doctor that will help her. We can’t wait for the Mayo clinic to get her in because the pain is too intense. It doesn’t matter where the doctor is located…we will travel to get help!
Using The Erythromelalgia Association’s physician directory, I searched for doctors in Dallas, Texas (based off of its proximity to where your IP address is routing from). The results provided are in the screenshot below.
It looks like the top three physicians (all neurologists) are associated with The University of Texas Southwestern Medical Center, a medical education and biomedical research institution. That is probably your best bet locally.
@gwadley might be near you
It’s hard to watch a parent suffer. I hope she gets some relief much sooner than Mayo. Keep us posted.
Thank you! I hadn’t seen that site before.
99% of doctors don’t have a clue of how to treat EM because there really is not a set treatment. Most have never even heard of it and want nothing to do with it. I did the gabapentin for 9 months and the side effects were awful and it did nothing. The first thing that I could tell was helping at all was Cymbalta (a serotonin inhibitor) but that was such a minor help it was barely noticeable. Then we changed from gabapentin to Lyrica. I notice just a little more help but the miracle drug for me has been CBD oil. (NOT JUST ANY CBD OIL). Several people recommended NaturesLove.org (I use the extract drops, 1 dropperful 3x day) because the market is unregulated, you really don’t know what you will get but others on this group have already done the experimenting and NaturesLove.org is working for them too. It’s also one of the cheaper oils but you can still plan on spending $100-$200/mo. for it. It’s so worth it though. I’m sure there are other brands that work but it would be a lot of experimenting. I ran out and purchased a Charlotte’s Web brand for twice the price locally and it did nothing for me.
My feet are practically normal now and rarely flare anymore. I’ve feel like I’m getting my life back. I no longer have to confine myself in a 65 degree room with my feet up and the fan on them. I’ve actually spent more time outside this year than any in the last 3 years. The longer I take the CBD oil the better it works (I’ve been taking a few months now). I just can’t believe I’ve gone through all the pharmaceutical crap I have only to find the best thing is not a drug. I want to start trying to back off my Lyrica now since the stuff makes me brain dead. Hopefully!!!
Thanks. At this point we are willing to try anything. I’ve ordered some drops from the NaturesLove website.
I saw Dr. Benjamin Chong at UT Southwestern in Dallas for about 5 years, he is also the one that diagnosed me. If you can get in to see him, I would.