My daughter was diagnosed with EM at Stanford University Childrens Hospital. I am not very pleased with the care we have received and would like to get a second opinion and find different care. Can anyone recommend a doctor with experience and success in treating patients with EM in California? I was considering starting with a Rheumatologist since that's where I began at Stanford.
I think starting with a Rheumatologist could be a good way to go. I'd try to get the services of the most learned of the Rheums. in your area i.e. the person who holds the Chair in Clinical Rheumatology. A well regarded Consultant Dermatologist might also have something to offer in terms of higher knowledge, diagnosis and treatment.
Jay S. Cohen, M.D., 1337 Camino Del Mar, Suite C, Del Mar, CA 92014,
Phone 858-■■■■■■■■.
This information is a few years old, so I don't know whether it's still valid. He has had EM himself since 1995 I believe.
There are several articles from him about EM on the web - MedicationSense.com
Good luck.
I spoke with dr Cohen a few yrs ago and found him very helpful. However I had A Neuro-stimulator implant and it has really made a difference in my EM. I have had it in my feet for nine years. There was a time when I felt I just could not go on but now have been relieved greatly. Good luck. Patty
I really feel a Neurologist is a good choice. They are typically well versed in peripheral neuropathy and medications for nerve disorders. Gather as much information as you can about EM for the doctor to get himself more educated on the disorder of EM. Tell him about our web site.
HI Patty.
Could you tell us more about the neurostimulator you have implanted in your feet?
Thanks,
Dragica
patty said:
I spoke with dr Cohen a few yrs ago and found him very helpful. However I had A Neuro-stimulator implant and it has really made a difference in my EM. I have had it in my feet for nine years. There was a time when I felt I just could not go on but now have been relieved greatly. Good luck. Patty
Hi There!
It might be a good idea to see if your daughter can be seen by the Stanford Pain Clinic in Redwood City, CA. They can be reached at 650-■■■■■■■■. I am a patient there and my EM specialist is located there. I go there regularly and find the staff to be great. I’m crossing my (swollen) fingers that they will take children, but honestly have no idea. Please call them and ask!
Unfortunately I am a regular at Stanford Hospital myself. I have been admitted to the main hospital (due to high pain from my EM) every 4 weeks or so, for too long now it seems.
Best of luck to you!
Pesto
Hi, I am living in Victoria, Australia and have long been frustrated by lack of medical knowledge on this subject. I have found Vascular Specialists to be the most informed with EM. I have had EM seriously for the past 4 years although I am clear at this point. On the plus side young people are more likely to improve or just have episodes. I am convinced that this is because their bodies repair better than we older people, especially if their diet is good, plenty of B1 & B12 ( the nerve vitamins). EM appears to be a nerve mutation that continues to mutate. Not enough work is being done to understand this, research seems to be focused on pain relief which with EM is proving difficult. Hope you have success in finding better care for your daughter and she improves. I am happy to help with other methods ( non invasive) which benefited me.
Dear Mal, Great to see you ;) Did you mean you are in remission from EM ? Please would you write a discussion post for us about this and detail your non invasive methods. The community would be so grateful to you :). We dont often hear happy uplifting reports or information about something that helps. Like you I am hot on the B's vitamins and diet. Thank you so much. Big hug x