GERD symptoms - but no GERD

Hi

I've been suffering with GERD symptoms for over a year now and was diagnosed with a hiatus hernia by endoscopy last year. Was put on maximum acid suppression but this has not relieved the symptoms. My symptoms are an almost constant feeling of inflammation in the esophagus, and sometimes feeling like I want to throw up. This also seems to affect my heart, increasing heart rate and causing palpitations. Moving around, even walking makes it worse, and to ease it I have to basically remain seated or lying inclined for most of the day. Luckily I have a desk job.

Have since had a ph test and barium swallow. During the ph test I was very symptomatic, but it only showed 6 instances of acid reflux vs 51 cases of symptoms. During the barium swallow I was also symptomatic but it showed no reflux, and also no hiatus hernia.

For most of my life I have had a problem with food getting stuck in my eosophagus, I wont eat anything without a drink of water because I know it needs washing down. My manometry showed that part of my esophagus doesn't seem to contract properly, but the lower sphincter is fine.

The doctor is now saying he doesn't think it is acid reflux, which I sort of agree with as some of my symptoms are not consistent with acid reflux, such as it being worse when standing, and better when lying down on a slight incline. Also if I dont eat for a while it seems to get worse.

I have another endoscopy scheduled to test for eosinophilic esophagitis, but the doctor says its a 1 in a million chance I have it as its so rare. If it comes back negative he says theres nothing they can do, and I have a disease similar to IBS but that affects my esophagus. All I can do is learn to cope with it.

Does anyone else have this, or even heard of it? I'm only 26 years old and the thought of living with this pain for the rest of my life is daunting, Im just trying not to think about it. The doctor really didnt have any advice beyond the common GERD advice like dont eat spicy food.

Thanks

Post Edited (Andy1986) : 4/15/2013 4:45:21 AM (GMT-6)

Thanks, I guess that is what it is, he described it as a sort of IBS of the esophagus, where there was nothing physiologically wrong but have discomfort and pain. I feel as if my esophagus is constantly inflamed, the doctor said they will be able to see if it is inflamed or not in the next endoscopy.

I guess I have to figure out a way to manage it, Im on pain killers and anti-depressents at the moment. Im on 80mg of nexium but my doctor wants me to reduce it as he doesn't think acid reflux is causing the symptoms so would rather I wasnt taking such huge doses of medication.

I was gradually getting better over the last month then one night I had a pint and half of coke because I was feeling better. When I went to bed that night I felt panicky and my heart started racing. I think Im not used to the caffeine which flared up my anxiety, but ever since then my esophageal pain has been constantly worse. Not sure if it was the coke itself that irritated me or the bit of panic, but its not like I had a panic attack or anything. It seems to take weeks for my esophagus to calm down again but at least I know it does calm eventually.

It's quite a hard to accept that there is nothing they can do for me, and I will potentially have some residual pain for the rest of my life. Deep down Im hoping to come up positive with esinophillic esophagitis but dont want to pin my hopes on it.

Has anyone here resolved their hypersensitivity problem?

Have you tried carafate, gaviscon or maalox? they help me when the esophagus is bad and very sensitive

I have the same problem, I did my test while on ppi because I was still very bad, I had symptoms all day while on my bravo test, but the test showed zero reflux

Then one day I was feeling better and had a frapuccino, ice-cream and some fruits, and everything went downhill since then

I feel my esophagus constantly irritated and the pressure in my chest is horrible

i tried to reduce my ppi, but now my throat burns very bad :(

let me know if u find something that helps

maybe try to reduce your pain-killers, maybe those are the culpit

I know that now that me esophagus is bad, everything bothers me, even vitamins