I tried making an appointment with recommended neurologists in my area but they are $600 a visit and unfortunately I don’t think I can afford this for a really long time. I also am hesitant to make appointments because of the virus as well so I may not be able to for quite some time.
I’m dealing with a lot of stress this past month because I noticed the EM spread all the way up to the top of my thighs. Just a few weeks ago I noticed it traveled up to my knees for the first time and now it progressed this much! Before it would always be my feet hands and lower legs. I had non painful EM since I was a child (10 years old) and am now 24. Is there anything I could do to help stop the spread in the meantime before seeing a doctor. I know that probably sounds silly as this might not be possible but I don’t know what else to do.
I don’t think I can help with your primary question. I will say it’s important to get a formal diagnosis. While you say you’ve had EM for a long time, there are some parts of your story that don’t quite fit with how EM typically presents. When symptoms don’t line up perfectly that makes the certainty of a diagnosis even more important. Another community member of similar age to you, who believed they had EM, mentioned recently they were diagnosed with POTS instead. Make sure the neurologist you plan to see is familiar with EM before you pay $600 for an appointment! When it costs that much, you want to know for certain the doctor is familiar with EM, has diagnosed or treated it before, and that you won’t be wasting your money. Most doctors are unfamiliar with EM. Call the doctor’s office in advance and ask if they’ve treated EM before.
PS: Since you have a chronic illness, you may want to consider a health insurance plan with a low or $0 deductible.
.
Hi, thanks for your response. I’m pretty confident its EM because all my symptoms show if I take a warm shower. It gets white again after cooling down. My feet do get red when exercising as well. Right now I’m just concerned with how long it will take for me to see a doctor because of the virus. I do have kaiser insurance but they do not have doctors who are familiar with EM in southern California and they do not cover outside appointments. The $600 appointment was for a doctor that was mentioned on this site an hour away from where I live and I can’t afford that either.
How do you know Kaiser Permanente doesn’t have any doctors in southern California that have treated EM before? Have they verified that themselves? Because Kaiser is also my insurer and I fought with them over this very point. I told them that if they couldn’t find me a doctor at Kaiser Permanente who had treated EM before, they would have to approve me to go to Johns Hopkins (I live in the DC metro area). My case got kicked up the ladder until I was working with the Director of Physicians for Kaiser Permanente Mid-Atlantic, who was himself a pediatric neurosurgeon. He assembled a team of doctors of various specialties to brainstorm on my case. Most importantly, they sent out a system wide message to all Kaiser Permanente physicians in the Mid-Atlantic seeking any who had treated erythromelalgia before. The team first sent me to a Kaiser neurologist who had seen EM a couple times before, but he didn’t really have any treatment ideas. Then they sent me to a Kaiser anesthesiologist who said he had treated EM six times previously. That anesthesiologist became my doctor after he put me on medication that stopped my symptoms. Kaiser Permanente had agreed they would cover a referral to Johns Hopkins if they could not find any of their own doctors who could treat EM. All they asked was that I give them time to find someone at Kaiser Permanente first. That effort ended up being successful and I didn’t need to go to Johns Hopkins.
If Kaiser Permanente has consented they have no physicians in southern California who can treat EM, they should be willing to pay for you to go out of network. They made that offer for me in the Mid-Atlantic. If you’re presuming Kaiser has no doctors who are familiar with EM in southern California, you need to push them harder to verify that or find you one. The law is on your side. If they can’t treat EM, they have to send you someplace that can.
Wow thank you so much for sharing all that. I really appreciate this. I didn’t know this was a possibility for me. I just assumed because there is an Erythomelalgia website, that users here recommended, that lists all doctors in a 100 mile radius for you that have treated EM before. All of them were outside of Kaiser. Also all my experiences at kaiser have been extremely poor so I didn’t really want to see a doctor at kaiser anyway. Since you mentioned that they would accommodate an outside referral if they couldn’t treat it themselves then I will definitely start making an appointment to get the diagnosis. I can create a thread to document my journey as well.
@rtstar This is a great place to start. Dr. Jay Cohen was a prominent physician who treated his own EM. He has quite a few at home, rather benign supplements that you can try. I have personally found 2 supplements that he recommended that help me but everyone is different. I’ll link the page below, you have a scroll a bit to get to the copy and pasted post with his advice. BUT, supplements are still chemicals like medications so be cautious and make sure they don’t interact with any current medications you are taking or health conditions you have.
Thank you so much! This is what I was looking for 