Hi,
Does anyone know of any EM specialists in the San Francisco Bay Area? Preferably a neurologist who has experience with EM. I was diagnosed with EM two months ago by a rheumatologist and my symptoms have been evolving and spreading from my feet to hands. In addition to heat sensitivity, I now have cold sensitivity as well in both lower & upper extremities (ice cold sensations when the room temperature is not warm). I am wondering if there’s a peripheral neuropathy component to this. The rheumatologist doesn’t think it’s helpful to see a neurologist so additional blood tests for autoimmune diseases were ordered. So far, everything has been negative. I would be very grateful for any recommendations for an experienced EM specialist. Thank you!!
While I encourage anyone living in the Bay Area to respond with more specific suggestions based on personal experience, The Erythromelalgia Association offers a physicians directory that lists about 20 doctors within 50 miles of San Francisco.
@motherlove might have a neuro rec.
I am scheduled to see a Dr Aguilar at the Stanford Pain Clinic in Redwood City on May 8. They have been treating EM patients.
You may have Lyme disease, that’s what was behind my EM. By the time I realized it might be Lyme, I was pretty darn sick with POTS, GI problems, sleep problems, and more. Lyme disease develops very slowly so many suffer for years with gradually worsening symptoms. I think I had it for at least 10 years before things got really bad.
Let me know if you want the names of some Lyme literate doctors in the SF Bay Area. The NP I see is in SF, works with a well-known LLMD here on the west coast.
@CarterDK Thank you for the link. I was hoping someone has a personal recommendation (specifically in neurology or vascular medicine?). I wanted to make sure that I am not having a neuropathy/perfusion issue that is separate from EM? My fingers have also become pruney looking.
@dkhiggin Thank you for the reply. Let me know how it goes with the appointment. Did you see someone else before the referral to the pain clinic? Right now, I am just looking for someone who can get all of my different symptoms sorted out; not only do I have the classic EM symptoms from heat exposure (erythema, burning, tingling, parethesia) but I also get these cold sensations in feet & arms and pruney finger tips. Wondering if these are all due to neuropathy or vascular issue. It’s good to know that there’s a pain clinic with experienced in treating EM.
It sounds like you also have Raynaud’s. Many people with EM do, although not me. So far! I’m pretty excited about this visit to Stanford. I’ve been hurting for a long time now.
In my hometown in Alabama, I have seen an endocrinologist, a pain specialist, a vascular specialist, and a neurologist. I see my rheumatologist next week. It’s been at least two years since I’ve seen him, so he doesn’t know about my EM diagnosis yet. The vascular specialist diagnosed me, finally, but said he couldn’t help me! My neurologist said that is because he’s a surgeon and doesn’t prescribe medicines. My neurologist is the one who has been working with me the most. He hadn’t treated anyone with EM before me, but reads articles in between visits and is willing to try different meds or combinations of meds.
I get pruney also when my Raynauds kicks on.
Also developed Dysautonomia after being dx with both and livedo reticularis. All vasculopathy which is linked to neuropathy. Seems one comes with the other.
I am looking for doctors in the bay area as well. I have Kaiser insurance. Neurologist referred me to Stanford Neuroscience dysautonomia clinic. But Stanford would not let me come. Still working on finding out why.
Take care.
Get an appointment at Stanford Pain Clinic, they are up on it and may be able to help you. Good luck 