desperately need answers and doctors can't help

Hi, long time lurker here (used to post a lot on anxietyzone). For 3 years I have been having extremely troubling symptoms and not one doctor I've seen can help me or has ever ever heard of my symptoms.

Problems started 3-4 years ago with dysphagia, I had several tests and while no cause was found it was determined it was neuro-muscular in origin (went through a big ALS scare). My problem is in initiating the swallow as opposed to the feeling of food getting "stuck."

The dysphagia is bad enough but it's the other symptom I have, which started at about the same time as the dysphagia, that is extremely disturbing. It's difficult to explain but I'll try my best. I get his strange pressure/squeezing in my upper chest/lower throat area, as if my esophagus is being squeezed. It gets tighter and tighter until finally it releases. When this happens I feel as well as hear a slight pop right at the bottom of my throat/neck (maybe the upper esophageal sphinter). Then the inside of my throat gets jostled and I get this horrible feeling like I will vomit, it's as if something hits my gag reflex. I also feel a small burst of pressure in my ears and my cheeks react also as if I'm gong to vomit.

I have no pain with this, just a lot of pressure. The whole thing pretty much feels like the few seconds before one gets sick; along with this are some creaking and groaning noises in the upper esophagus.

This happens well over 100 times a day, and is much worse after eating or moving. For instance I could be driving in my car for 30 minutes without it happening once. But once I stop, get out and walk, within 20 steps it will happen. Obviously this is affecting my life in a big way. I no longer go out with friends or just about anywhere fun because this is such a problem. Eating with others is definitely out. I literally feel like I will vomit over and over all day long. I'm afraid one of these times I won't be able to control it.

Like I said this is hard to explain but I'm hoping someone reading this will have some idea of what it is and how I can get help for it. You all have such vast medical knowledge.

I've seen my own PCP, a GI, ENT's, neuro's, chiropractors, alternatives, had swallowing studies, brain MRI, scoped up and down. The only thing found was very slight acid and a small hiatal hernia. My GI doctor said neither was enough to cause my problems. Brain MRI was normal except for a borderline chiari malformation and I'm told that can't cause my problem. The GI doctor said it sounds like a spasm of some sort, but WHY?? he doesn't know nor does he know how to help it. He's given me a couple different prescriptions which have not helped.

I'm at a loss, doctors don't know so they write me off. I've also posted on neuro and other boards and googled this to death but no one has ever heard of this and I can't find anything even close when googling. It's a real and serious problem and I don't know what else I can do to get help.

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Originally Posted by norahs

I've seen my own PCP, a GI, ENT's, neuro's, chiropractors, alternatives, had swallowing studies, brain MRI, scoped up and down. The only thing found was very slight acid and a small hiatal hernia. My GI doctor said neither was enough to cause my problems. Brain MRI was normal except for a borderline chiari malformation and I'm told that can't cause my problem. The GI doctor said it sounds like a spasm of some sort, but WHY?? he doesn't know nor does he know how to help it. He's given me a couple different prescriptions which have not helped.

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Could it possibly be anxiety related and are you treating it? :shades:

Positive thoughts

Definitely not anxiety, I'm not real anxious per se and this happens no matter what, if I'm home alone relaxing with a good book on the weekend or if I'm at work with people around me. And I was fine (that is no esophagus problems) during my MRI when I was feeling anxious inside the tube with my head surrounded by a cage.

It somehow seems to be related to food and movement, that is when it's at it's worst, after eating and when I walk around.

I wish it were as easy as anxiety. This is a definite real problem, even the doctors agree, they just haven't a clue what it is or how to treat it.

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Originally Posted by norahs

Definitely not anxiety

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Then respectfully, why are you posting on an anxiety website? :shrug:

Positive thoughts

Respectfully, because I tend to be a hypochondriac and I know people here may be able to think outside the box and have an idea of what this might be or may have an idea of another direction I should take in trying to find a solution to this.

Am I not allowed to post here if I don't have severe anxiety problem?

btw, I do have a prescription of valium for a vertigo disorder I have (meniere's or MAV) and taking a dose of that makes me feel loppy and relaxed but has no affect at all on this problem.

No one here is medically trained and strangers on the internet cannot offer a more informed medical opinion than all the professionals you've seen :shrug: I don't question you're having physical symptoms but thus far nothing indicates a physical cause.

Some common anxiety symptoms come to mind like globus, reflux etc. but beyond that???

Positive thoughts

I'm a bit confused about your assertion that you don't have anxiety, but you are an hypochondriac. One is a symptom of the other.

Well, the informed medical opinion that all the medical professionals I've seen have given me really hasn't helped much so far, has it? Which is why I'm reaching out to others for their opinion. Maybe someone here has had similar symptoms or has a name for this strange thing that is happening to me. Obviously something is wrong and there must be an answer somewhere. I've run out of resources in my own town, so yes, I'm looking to strangers on the internet for a little advice.

Just because the doctors haven't found a physical cause doesn't mean there isn't a physical cause.