Hello everyone. I’ve been reading your comments and stories since December and this is my first post. I do not have ES, but my brother-from-another-mother discovered that he has elongated styloids and calcification from his new dentist when she did a 3-D cone scan and, after questioning him about symptoms, told him they are possibly due to ES. His issues run the gamut of what I’ve read here: tinnitus, deafness that comes and goes in one ear, aching jaw, feeling lump in back of throat, neck and shoulder pain, painful electric shocks down his arms and legs, recurring hand and foot numbness, tingling, face numbness, etc. Has been to the ER with TIA, again to the ER for racing heart rate and crazy blood pressure and they told him nothing’s wrong. When he turns his head to the side and and down, his arm goes immediately numb. Neurologists told him he needs a psychiatrist, rheumatologists told him he was either crazy or wait a year and they’ll know if it’s ALS with nothing else to be done. You all know the drill…I’m preaching to the choir.
Luckily he now has a PCP, dentist and oral surgeon all of whom agree that he has Eagle’s. He’s spoken to Samji’s office. His PCP is sending in an order for a CT without contrast this week which he will pass along to Samji.
My bro has a new symptom today and searches on this site haven’t shown any links which leads me to my question: Has anyone felt like their hands were burning? He’s had this sensation all day, so I’m asking the ES warriors who have gone before. Is this symptom wildly off base? Thanks in advance for taking the time to read my tl/dr.
Also, my 17 year old niece has hEDS, MCAS, CCI, Chiari and now possible ES.