Patrick again!!! Just wanted to let you know that the Rheumatologist has ruled out Relapsing Polychondritis (thank goodness) and has now referred me to a Neurologist to work me up for Trigeminal Neuralgia! I don't have the severe pain that these people do, but there may be some relation to the symptoms? Just saw my ENT MD and he thought it might be related to TMJ syndrome? I'm getting sick of seeing specialists and no one has the correct answer!!! While I wait on the appointment with the Neurologist I will set up a meeting with an Acupuncturist who also does massages! MY ENT MD suggested that an epidemiological approach to this syndrome would be very beneficial for data collection! Any researchers out there?
I guess misery loves company ...
I too have had this same problem! It has probably been going on for 2-3 years and seems to be getting worse!
Like clockwork my right ear gets red every evening between 8-10pm. It can and does occur throughout the day also!
I recently gave up drinking wine (due to what I have read here), and it seemed like the ear did not get red for a few days ... then it started again just like everyday, so back to the wine!
I note that heat (hot rooms) activates the redness as does sexual activity?
I get an aura, tinnitus, right jaw pain in association with the red ear?
Am presently being worked up for Relapsing Polychondritis ... don't know which is worse? My Rheumatologist did not seem to know about Red Ear Syndrome!
God bless you all ...
I have the same symptoms like you ! However my Rheumatologist says there are no tests that will confirm Relapsing Polychondritis. How did your Rheumatologist rule out Relpasing Polychondrities for you ?
Comment
Patrick again!!!
Just wanted to let you know that the Rheumatologist has ruled out Relapsing Polychondritis (thank goodness) and has now referred me to a Neurologist to work me up for Trigeminal Neuralgia! I don't have the severe pain that these people do, but there may be some relation to the symptoms?
Just saw my ENT MD and he thought it might be related to TMJ syndrome?
I'm getting sick of seeing specialists and no one has the correct answer!!!
While I wait on the appointment with the Neurologist I will set up a meeting with an Acupuncturist who also does massages!
MY ENT MD suggested that an epidemiological approach to this syndrome would be very beneficial for data collection! Any researchers out there?
Parent comment
I guess misery loves company ... I too have had this same problem! It has probably been going on for 2-3 years and seems to be getting worse! Like clockwork my right ear gets red every evening between 8-10pm. It can and does occur throughout the day also! I recently gave up drinking wine (due to what I have read here), and it seemed like the ear did not get red for a few days ... then it started again just like everyday, so back to the wine! I note that heat (hot rooms) activates the redness as does sexual activity? I get an aura, tinnitus, right jaw pain in association with the red ear? Am presently being worked up for Relapsing Polychondritis ... don't know which is worse? My Rheumatologist did not seem to know about Red Ear Syndrome! God bless you all ...
Replies
Patrick,
I have the same symptoms like you ! However my Rheumatologist says there are no tests that will confirm Relapsing Polychondritis. How did your Rheumatologist rule out Relpasing Polychondrities for you ?