So I've been reading through a few of the threads on here and it seems like a lot of us have a problem actually getting an accurate diagnosis. That's what I'm going through right now and it's driving me crazy (on top of the actual symptoms driving me crazy).
Warning: This is going to be a long story!
Here is what I've been going through, if anybody could be so kind as to review and give me any pointers I do appreciate it:
- about 3 years ago I had a strange fungal infection in my throat. It started after I went to the dentist for a root canal. The dentist apparently could not get the tooth numb because it was infected so he didn't finish the root canal. I don't know if this is related or not, but just wanted to mention it. Shortly after going to the dentist I developed a fever. I went to the doctor. They did bloodwork and everything looked fine. I went to the dentist and he didn't see anything via x-ray. The fever continued for a few days until one night I woke up in the middle of the night and couldn't talk straight and felt like one of my hands was numb. Almost as if I was having a stroke or something. I got to the ER and ended up being in the hospital for 5 days while they tried to figure out what was wrong with me. Eventually they determined that there was some kind of fungal infection in my throat and it was in some location where antibiotics and other medicine weren't able to get to it. This was causing the fever and I assume the neurological problems from having a high fever. An ENT doctor went in and drained the infection from inside my throat. After that I recovered well over the next few weeks.
- I had no throat issues or anything for about 2 years. Then, about a year ago, I started having problems. All of my problems are on the right side, which just happens to be the same side that the infection was on. This is why I don't know if they are related or if it just a coincidence.
- My problems started with my right ear feeling full. I had this problem before and it just needed to be cleaned out at the doctor because it was full of wax, so that's what I figured it was again. When I went to the doctor they said my ears were clear though.
- Shortly after the ear fullness started I began to get a feeling that the right side of my throat was congested. This feeling is there almost 24/7. A little while after eating it definitely gets worse and I have the feeling of mucus and throat clearing/coughing (but nothing ever comes up). This also makes me feel like I can't breath properly, so shortness of breath.
- I went to the ENT doctor who did the scope up the nose down the throat deal and didn't see anything remarkable other than some "thick mucus" at the back of my throat. She had me try all sorts of nasal sprays and allergy medicines but none of them really seemed to help. She also had me try Prednisolone liquid to see if that helped... it didn't.
- I went to two separate allergists and had all the prick, injection, and food directly on the skin tests done and at both allergists no food allergies were found and only minor other allergies like mold and dust mites.
- I had a swollen lymph node on the right side of my neck/jaw ever since the throat infection. Since we couldn't figure anything else out I decided to have the node removed just in case it was pushing on things and causing my ear and throat problems. It was removed and biopsied with no issues found. This didn't seem to help my ear and throat issues.
- I went to one GI doctor who said it could be acid and that I should avoid eating any dairy. I tried that and it didn't seem to help. He also had be try Prilosec and Nexium, which I didn't think really helped much but maybe I didn't take them long enough.
- I went to another GI doctor who did the EGD endoscopy. He didn't find anything bad but did say that I had some rings in my esophagus and that testing showed I had EoE (Eosinophilic Esophagitis) but that since I wasn't having any issues actually swallowing (which apparently is the main symptom of EoE) he didn't have to stretch out my esophagus or anything. He gave me Singulair and Flovent (to swallow) to treat the EoE. Neither of these seemed to do anything for my main issue though.
- I went to a cardiologist and had a stress test and echocardiogram, that was all normal. I also wore a heart monitor for 30 days, which was also normal.
- I went to a different allergist who had me do the lung test where you blow into a tube and that was normal.
- I went to the ER one time because I was feeling short of breath and they did a chest x-ray, CT scan, EKG, and the D-Dimer blood test (to check for blood clots), and all that was fine as well.
- I recently went back to another ENT doctor and he did the up the nose down the throat thing again (I've probably had that done 6 or 7 times now). He didn't see any issues but he did have some device that measured ear pressure and he said that my right ear definitely as negative pressure which indicates that the Eustachian tube is blocked on that side (which would cause the feeling of fullness). He said there really wasn't a good way to fix that other than to try Nasonex again to see if that helps open up the Eustachian tube.
If you're still reading, thanks... I know this is long but I wanted to include all the details in case any one thing holds the key to figuring out what is going on.
At this point it has been a little over a year since the ear and throat symptoms started. In just the last month or so they seem to have gotten a lot worse to the point where I barely leave the house because I always feel anxious like I can't breath. I think it is also impacting my diet because I know as soon as I eat things I will feel even worse.
My main symptoms are:
- Feeling that my throat has stuff in it, mucus, etc. that I can't clear out.
- Feeling that I can't breath properly, out of breath easily after just walking upstairs, etc. basically feels like I constantly have a cold or something even though I have no head congestion or anything in my nose.
- Waking up once or twice each night feeling like I can't breath.
- Right ear and down the right side of my face (from the ear to about the jawline) always feels "full" like it needs to pop, but I can pop the ears and the feeling is still there. Randomly this gets worse to where I can barely hear out of the right ear for awhile.
- Constant need to clear throat, especially within about 10 minutes to an hour after eating.
- I RARELY have any actual heartburn symptoms. If I do have any burning at all it is usually higher up in my throat area around adams apple. But even that is rare. Mainly I just have the feeling that there is something blocking my throat but without burning.
I am to the point where this is having a huge impact on my day to day activity. I am scheduled to see yet another ENT doctor soon but I don't know if they will be familiar with LPR or if that is even what my symptoms point to. I don't know if I should be trying the PPIs again and give them longer to work, or if I have something just going on with the Eustachian tube that could be causing this, or if somehow it is all in my head because of the anxiety about not being able to breath. My GI doctor also said we could do the BRAVO test to see if I have a lot of acid issues, but I don't know if that is the proper test for this or not at this point.
Any ideas? Thanks for your help!