I’ve been having erythromelalgia symptoms for the past 3 months that haven’t been painful until last week. My feet will turn a dusky red color, rise in temperature and my veins will poke out. Cold water and elevation temporary relieves it but it’s making having a job especially in construction very difficult. I’m otherwise healthy except for terrible anxiety. I can’t get a diagnosis and can’t find any other conditions that cause symptoms like this other than EM. Heat, insomnia and wearing socks and shoes seems to trigger it for me. I’ve had a venous Doppler done and a few cbcs and a urine protein test they were all normal. I just turned 19 and can’t get any answers as my primary care and er doctors have never heard of it and I can’t afford to see a specialist. How do I know if I have primary or secondary? Are people my age know to get primary more than older people. Would a CBC and protein test clear me of secondary em. And is which is more common? I know em can show up before some disorders even show up. But should I be getting different tests other than cbcs and urine tests?
I’d highly recommend seeing a neurologist that is knowledgeable in the EM arena. Dr. Phillips at UTSW in Dallas is pretty awesome. I’d take some pics of your feet when “normal” and when “flaring”. Hope this helps!
Was the doppler ultrasound test performed during a flare?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3710946/
^ Refer to the image provided by the case(secondary EM).
DITI (digital infrared thermal image) demonstrated higher temperature of affected area.
Do you have health insurance? Because you’re going to need it. If you do not currently have health insurance, you should check your eligibility for Medicaid. If you are not eligible for Medicaid, you may be eligible for a federal subsidy to buy private health insurance under the Affordable Care Act. You can get all the answers you’ll need and attain coverage by visiting www.healthcare.gov.
To get diagnosed you are going to need to see a specialist. If you can’t afford that, there are federal resources to help. You should use them.
As to the substance of your question, there are currently no tests that can conclusively confirm a diagnosis of Erythromelalgia. Tests can be performed to rule out other causes and a diagnosis of Erythromelalgia can be made based on visual observation and response to stimuli. For instance, if symptoms are induced by heat and alleviated by cold or elevating the affected limbs above the level of the heart that would strongly suggest Erythromelalgia.
I’m sorry you are so young and suffering!
I’m 47 and this all rocked my world.
Being in construction is really tough with this condition.
I see a wonderful Neuro at John’s Hopkins names Dr. Mohammed Ali Khooshnoodi . If you want to see him or another Neuro at Hopkins you need your doc to refer you.
I went to Mayo and they sucked!
I like Hopkins much better.
I would suggest looking into genetic causes like an scn9a mutation. I found mine by doing 23&me and feeding the data into another program called Prometheus where I searched scn9a and found anmutation.
Good luck and GOD Bless .
Amy thanks for your compassion unfortunately I recently had to leave my job because of the relentless heat outside here in Texas. Ive been waiting 2 months to get health insurance but thankfully my primary care is working with me and pointing me in the right direction. I have a test set up to test for the sc9na mutation and the jak2 mutation to help rule out blood and bone marrow disorders.