Undiagnosed dysphagia

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I am a 19 year old female and I have been experiencing difficulty swallowing (dysphagia) for about 1.5 years. I first began experiencing it during my senior year of high school. I had two incidents where I felt like I had taken too big of a bite of a sandwich and it didn't go down immediately so I took smaller bites. These incidents were spaced out, so I thought nothing of it. Then, in January 2015, I was in my AP Chemistry class going over the answers to homework before a test. I was eating lunch because it was a double period and I would not have the opportunity later in the day. In the middle of my peanut butter sandwich, I felt the food stick in my throat and I also felt nauseated. Naturally, I thought it was flu-like symptoms and went home. During the next week, I stayed home and the swallowing seemed to worsen. I got to the point where I was not able to swallow even applesauce. This may have been apprehension as I did not know what was going on. I made an appointment with my physician and she suggested that it was acid reflux due to stress (I had a pretty intense schedule as I like a challenge and I am one of those people that strives for A's). She prescribed omeprazole and I was on it for months. It helped a little, but was overall, ineffective. In May, I had an endoscopy performed and was told, once again, that it was acid reflux and that my esophagus was inflamed and I was prescribed pantoprazole (omeprazole had previously caused joint problems in my knees). I went on like this for about 9 months with no improvement. Earlier this year, I have gone through a series of tests. I had a chest x-ray because I had a spot on my chest that was painful (it has gone, so I still do not know what it was) and blood work. Both came back normal. I, then, had a barium swallow study performed. This also came back normal. They suggested speech therapy to teach me how to swallow again. I felt that this was not the proper course of treatment and wanted a second opinion. I was referred to another hospital and I saw an ear, nose, and throat specialist. He thought it may have been my thyroid. I had a CT scan and an ultrasound and both came back normal. He wants to refer me to Cleveland Clinic, which is 5 hours from where I live, but I have researched their swallowing clinic and it seems that they offer the same tests that I have already gone through. I am not sure if it is worth it to go this far. My symptoms have come down to the following: difficulty swallowing solids (severe enough that I have to turn my head to the right and forward in order to swallow; worse in public and social situations in which I am uncomfortable); I have recently been lethargic even though I get more than enough sleep; I have also been irritable for no known reason about almost everything lately (could be something as simple as a text coming through at the wrong time when I know the person doesn't know that they are doing so); sometimes experience a burp-like sensation in the back of throat after meals; post-nasal drip from allergies makes swallowing more difficult; food seems to get stuck at base of throat; dry mouth as of late; have not noticed specific foods that are causing symptoms; occasional light-headedness; within the past couple of weeks, I have noticed a dull ache on either side of my neck that does not seem to be triggered by anything. I am at a loss for what it could be and all of the doctors that I have seen do not know what to do. Could I be allergic to something and not realize it? Could it be an anxiety disorder? Is it worth it to go to Cleveland Clinic? Any input would be greatly appreciated. Thank you for your time. - Lesley

0 likes, 9 replies

9 Replies

  • Posted

    I should also add that I have lost 30 pounds since this all started. 
  • Posted

    Hi Lesley,

    I'm sorry to hear what you are going through. It can be so frustrating and scary not knowing what's wrong. Have you had a manometry test yet? This tests the muscular contractions of the esophagus. It's not the most comfortable thing in the world, not necessarily painful, but just uncomfortable. A small tube is placed through your nostril and down the length of your esophagus and they have you sip small amounts of liquid spaced out at regular intervals to test how well your esophagus contracts or doesn't contract. Just a thought, I'm not a Physician, but this along with the Barium swallow diagnosed my Achalasia.

    • Posted

      Hi,

      I have not had the manometry test done. None of my doctors suggested it. I could ask about it and see if they would be willing to do it. Thanks!

    • Posted

      I've been having a similar problem. I am also 19, turning 20 in August. I have had this problem since I was about 14. Except it's very strange how it started. I was laying on my stomach in bed texting. I all of a sudden felt like my air had been cut off for a couple seconds. Then it went away for a couple minutes then It came back again. It scared me and I told my dad we had to go to the hospital ASAP. I tried to drink water but I could only take very small sips at a time. The doctor made me out to be crazy, she did not take any tests, all she did was look at my throat and said it wasn't swollen. My dad sided I with the doctor and took me home. Since then I could not drink properly. I remember trying to drink soda and it just regurgitated. So I found this new way to drink, I swish the drink in my mouth and swallow. Thats the only way I can drink without regurgitation. As for food I ate very slow and usually have a sip of water with a mouth of food to help it go down properly or else I'll choke. It has gotter quite worse this year. I haven't really spoke to anyone about it all theset year because I was embarrassed about it and the way the last doctor made me feel about it. The last three days I've barely ate or drank because it feels like my muscle are not relaxed and I just choke or I feel like the food or water isn't going down properly almost like it's sitting somewhere in my esophagus. It feels awful. I'm so embarassed to eat or drink in front of everyone. Its been so bad that it's just unbearable to live. A couple weeks ago I finally went to a walk in clinic doctor and I got acid reflux medication which I really don't think will help and she told me to wait until my appointment with new family doctorwhich is 5 weeks from now to get a referral for a scope down my throat. Just yesterday I went to emergency because I've been super weak and have had a really bad headache from not eating as well as when I try to swallow and I absolutely can't my heart races so bad. The ended up giving me stronger pills and finally sent a referral for the scope. They also have suggested anxiety may play a role in it. I believe it may but I doubt it was the start of this problem.

    • Posted

      Sorry to hear about how hard it has been got you. I completely understand not being comfortable eating out. I am exactly the same way. I hope they can figure out what is going on with you. Good luck!
    • Posted

      Don't give up! No matter what. Not doing anything about for 6 years is my biggest regret. I've just been so embarrassed about it. But I've come to understand that I really shouldnt be embarrassed about my health problems because I only have one life and I got to make it a good one. Good luck to you as well. If you wanna talk or anything you can add me on instagram. I'm from Canada, where are you from?

    • Posted

      I won't give up, but I just wish that one of the doctors would know what is wrong with me. Sure, I'll follow you on Instagram. My username is @lesley_xd_

      I'm from the US

  • Posted

    Lesley, I think some of what you describe would be consistent with achalasia.   This is where muscles tighten at the junction of the oesophagus and stomach and do not drive the peristalsis properly (the sequence of muscle contractions that take ood down into your stomach).   It is the nerve endings rather than the muscles themselves that are the cause, so eating whilst in a hurry, or whilst stressed, can make things worse.

    ​The tests are a barium swallow (which might be worth repeating), an endoscopy, to check for any physical obstructions, and a manomentry test (measures pressure at various points along your oesophagus to establish location of specific problems.

    ​Meanwhile try and relax, expecially around eating.   Give gravity a chance to help by keeping an upright posture, consider massaging your chest area and stretching your neck upwards;  and avoid food that might congeal or have a stringly texture (like bread, rice, tomato skins, striongly meat etc).

    ​This is an unusual condition and I would definitely go to see the specialists.

  • Posted

    This is how my issues started and it was finally diagnosed as achalasia.  Barium swallow and other tests showed no issues, you have to have the manometry motility study to be sure.  I waited 3 years to do the surgery, lost over 30 lbs.  I highly recommend you see a specialist ASAP.

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