I figured this would be a good place to post my entire story because it is one of frustration like so many of you.
At the end of April 2018 I started with a stuck in the throat feeling. I went to my allergist the week before because I woke up one day with a completely swollen throat and uvula and the walk-in dr thought it was an allergy. Allergist wrote it off as seasonal allergies and sent me on my way. I couldn’t get into my PC until the next week. When I feel helpless I start researching things. This is good but also bad because I swear you could type in “paper cut” and somehow it would be connected to some horrible thing such as cancer. I came up with acid reflux or thyroid.
I went to my PC and when I explained what happened and that I had seen my allergist she said “I normally would send you to an allergist but you’ve already gone” and then said absolutely nothing else about what it could be. So I brought up the two ideas I had and she said it could be either and sent me for and ultrasound and prescribed a PPI. After the ultrasound (thyroid was normal) I had pain and then started gagging and wound up at the ER.
ER Dr. didn’t know what to do with me but suggested an ENT. One was suggested to me but it was going to be 3 months to get in to see him so I went to another in the group. He said it was acid reflux and upped my PPI (that I didn’t earlier from my PC take because why am I taking meds for something you don’t know for sure I have ) so I start taking it. Had the inside of my throat swell up and went back to ER. This Dr thinks I have esophaguses and that’s why I can’t eat anything and even when I tell her it feels like it swells even more every time I attempt to drink water she sends me home with a narcotic. After a completely miserable weekend and lots of prayer I think to stop the PPI. Yep allergic. Swelling goes down but I teach school so I have to talk. I have a pop in my throat and am back to gagging and back to the ER.
Go see GI he scopes me and I wake up from the procedure and the first thing I’m told is that I was dilated as far as he could until I bleed. I had a very small case of esophaguses. But I should be able to eat now…I couldn’t.
My anxiety is off the charts I got back and forth between ENT and GI and various test. The worst was the esophageal mobility test. And am basically told it is just the acid reflux and my stress and the only other thing it could be was spasms in my throat that I was causing because of my anxiety.
I had to quit my job because of all the strange symptoms I was having.
Was also told I should see an OBGYN because “woman and your age and anxiety” all my hormones tested normal but I got a nice side trip to removed polyps.
I had been in a liquid diet at this point for over 2 months and lost 60 lbs. I attempted to eat food and got horribly sick. Bloated so much I popped ribs out of place among other issues, back to ER. My numbers for my pancreases concern my Dr and she wants to keep me because I might have pancreatitis. I have an appointment with my GI so she lets me go. GI refuses to see me when I show up for my appointment because as it is whispered to the front staff but I hear it, “they had to deal with me to much.” Come to find out (on my own) I now had issues with gluten and sugar.
I started to get better but was still having episodes with my throat. Started seeing a new PC and new ENT…THEY BOTH LISTENED TO ME!
Ended up having my tonsils removed a few months ago along with a big abscess. 3 week after surgery I had more trouble with my throat and the strange symptoms I had before were back and worse. It looked like I had Hashimotos. Just went last week for bloodwork and CT. My ENT called and talked to me himself yesterday and said I had Eagles Syndrome and he didn’t do this surgery but another ENT in the group does. I will see him Friday to see if he will do surgery. Praying he will.
I fell apart for a while but got it together to start to educate myself. Then I found this group. I feel so much better now. At first I was devastated because I thought I had this and Hashimotos and the endo won’t see me because I test “normal” and on top of that now another surgery. But after all the symptoms I read here I’m almost positive it is all ES! I am much calmer about possibly having my 3rd surgery this year and maybe getting my life back. Thank you all!!! And I only shared everything because I hope it helps some of you who have also had bad experiences with Drs. I felt like it was my fault and I had done something wrong to be treated that way. After finding good caring drs who would listen and try to dig I know it wasn’t my fault. Keep going to new ones until you find ones who fit!