Anyone have any knowledgeable , really knowledgeable doctors about this on the east coast or heck, anywhere??
My mom has been sent to so many doctors and Noone knows a thing about EM! She went to a vascular doctor in NJ who was recommended to her but that doctor knew not a thing. That doctor said she knew a doctor at Jefferson hospital in Philly who was familiar and had many EM patients and my mom trekked there and said the doctor couldn’t even pronounce it. She is teaching her doctors but getting nothing in return… Except bills.
Its just crazy, like all of you I’m sure she went from normal active healthy life to totally upside down, u repenting swelling/heat pain every single time she is hot or In any kind of warmth she is chained to the bathtub soaking her feet constantly for relief and I just feel so bad for her. I know some of you don’t live in the US but we are looking for a doctor who can help her or at least knows what they are talking about… I guess the problem is there isn’t much help anyway even with a good doctor… Sorry maybe this post is mostly a vent.
Sorry to hear your mom isn’t doing any better. The doctor who treated me is affiliated with Kaiser Permanente and named Ronjeet Reddy. He practices just outside the Beltway in Largo, MD at Kaiser Permanente’s Largo Medical Center. (It’s a fairly big complex and is probably bigger than some rural hospitals.)
He describes himself as “an interventional pain physician and anesthesiologist with expertise in non-surgical treatment of neck and back pain, joint disorders, and various neuropathic pain syndromes.”
He is really intelligent and understands erythromelalgia quite well. He evaluated my condition, which was unmanageable and highly disruptive at the time, and brought it under control. The very first prescription he wrote for me has worked extremely well for over two years. It’s like he knew exactly what to write. I was sent to Dr. Reddy by Kaiser Permanente after I demanded they find me someone experienced with erythromelalgia. Like your mother, I had gone to about a dozen doctors who had either never heard of erythromelalgia or had no idea how to treat it. Since going to random doctors I chose clearly wasn’t working, I asked Kaiser to find a doctor experienced with erythromelalgia on my behalf. That’s how I ended up seeing Dr. Reddy.
The only issue is that i’m not sure you can schedule an appointment with a Kaiser doctor unless you’re a Kaiser member. Kaiser Permanente is an HMO. When you have Kaiser as your insurer the physicians you see work for Kaiser Permanente. They don’t have private practices.
Dr. Reddy’s profile on Kaiser Permanente can be found here:
Thank you thank you thank you! I will share this with my mom! I really appreciate all the time you take for all your posts everything has been helpful/ appreciated - this one and also especially that last one explaining the mechanism of action of the reclast. Thank you
Can I ask what did they do to treat you?