Hi All I am new to the group and undiagnosed at this point - but going to finally see a head and neck surgeon in Boston in a little over 2 weeks. It has been a rough road the last several months (though not as hard as some folks on here!). I have been experiencing all of the strange symptoms and I have been to 2 different ENTs with bad diagnoses or no diagnoses for my issues.
My first ENT took about 5 mins to say I had TMJ and referred me back to my dentist which quickly became clear that wasn’t the issue. I pushed to have a second opinion because I was getting more worried and got into another ENT that finally ordered CT Scans and fortunately confirmed that I don’t have any issues in my throat and glands, but basically said come back in 3-6 months if the pain is still there. Not only is it still there it has gotten worse and now I finally have an appointment with the head specialist at Beth Israel in Boston - Dr. Jalisi. Does anyone have any information on Dr. Jalisi? I have seen that he has been noted on several papers related to ES but I don’t see any mention of him on the site. I am finally hopeful to meet with him this month since I feel like things are getting worse.
Just some notes on my symptoms:
- lump or something in my throat when I swallow
- consistent sore throats for many years now
- I have neck pain on both side but much worse on my left side
- consistent pain near the end of my hyoid bone on the left side - also feel it on right side but much less frequent and painful
- increasing pain under my ear around the sternomastoid
- hearing loss in my left ear over the last few weeks
- numbness in my extremities - especially left leg and foot and left hand over the last several weeks
- headaches and pain in back of left neck behind the ear
- also had periods of glandular pain and dry mouth
Has anyone else experienced some of these - especially the numbness and tingling in feet and hands? That one is particularly concerning and scary since I have never had these issues.
Thanks and happy to join this group - I will have lots of questions and hope to pass along what I learn!