Discussions By Condition: I cannot get a diagnosis.

extreme trouble swallowing-every bite sticks in my throat-3 years-no diagnosis

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: Anonymous
  • February 19, 2007
  • 08:22 PM

I am 27 and this started out of the blue three years ago. I can't swallow. Everything sticks in my throat, and I really mean everything (from meat to water and everything in between). I have been bounced around from doctors to surgeons, a dozen in all, and nobody can give me a correct diagnosis. First we thought it was acid reflux then achelasia (sp), and then to an unknown esophageal motility disorder. I have had upper GI's, barium swallows, blood tests, numerous upper endoscopy procedures and a biopsy. Every test, procedure and lab comes back inconclusive. My symptoms started with dysphagia (or in english- trouble swallowing), daily and nightly stabing chest pain ( I compare it to a heart attack and it is not heartburn), and extreme weight loss. Now I have added symptoms of muscle weakness, wasting and sensitivity to cold. I used to be a strong athletic girl and now I just look sick. Like an anorexic or cancer patient on her second round of chemo. Please, if anyone has any idea what is going on with me write back or email me at kerrazygirl@msn.com.

Thanks. Take care.
Jen

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14 Replies:

  • A friend of mine had similar symptoms and it turned out she is allergic to wheat/gluten. Have you ruled this out as a possibility? Something to consider, at least.
    Anonymous 42789 Replies
    • February 20, 2007
    • 02:38 AM
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  • my guess would be a goiter on your thyroid...your other symptoms sound like you're hyperthyroid which strengthen the goiter theory. get to an endocrinologist or have your GP run a thyroid panel.
    Anonymous 42789 Replies
    • February 20, 2007
    • 06:03 AM
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  • Thanks. I will talk to my GP about an allergy test and thyroid panel. Wish me luck...
    kerrazygirl 3 Replies
    • February 20, 2007
    • 06:13 AM
    • 0
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  • Is your voice normal? I started with swallowing problems then my voice changed and eventually lost the ability to talk. after about a year and half i was finally dx with ALS bulbar onset.
    Anonymous 42789 Replies
    • February 28, 2007
    • 02:50 AM
    • 0
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  • My voice is the same as always. And the other tests just came back normal for my allergies and thyroid. So, Im back at square one.
    kerrazygirl 3 Replies
    • February 28, 2007
    • 02:57 AM
    • 0
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  • Have you gotten tested for celiac disease? This is an allergy to wheat, barley and oats. My mom has it and had been diagnosed with a lot of other things first - fibromyalgia, osteoporosis and she was losing body mass for no reason. Others have been diagnosed with Crones Disease, Lupus and Cancer. Find a doctor who is aware of celiac and will take you seriously. They should do a 3 panel test.There is lots of good info on the celiac foundation website.Good luck!
    Anonymous 42789 Replies Flag this Response
  • Have you had a video swallowgram?
    rad-skw 1605 Replies Flag this Response
  • Well, a video swallowgram sounds interesting. I have not tried this one yet. I am currently 6 months pregnant with our second child so I cannot have any procedures done until I deliver. So, I will write this one down and ask about it when I see my doc again in November. All is the same with the normal symptoms. I do gain weight while pregnant so I am having another healthy pregnancy. It is just a lot of work eating and not as much fun as it should be eating ice cream and pickles. Thanks again for the suggestions.Take care,Jen
    Anonymous 42789 Replies Flag this Response
  • I am 27 and this started out of the blue three years ago. I can't swallow. Everything sticks in my throat, and I really mean everything (from meat to water and everything in between). I have been bounced around from doctors to surgeons, a dozen in all, and nobody can give me a correct diagnosis. First we thought it was acid reflux then achelasia (sp), and then to an unknown esophageal motility disorder. I have had upper GI's, barium swallows, blood tests, numerous upper endoscopy procedures and a biopsy. Every test, procedure and lab comes back inconclusive. My symptoms started with dysphagia (or in english- trouble swallowing), daily and nightly stabing chest pain ( I compare it to a heart attack and it is not heartburn), and extreme weight loss. Now I have added symptoms of muscle weakness, wasting and sensitivity to cold. I used to be a strong athletic girl and now I just look sick. Like an anorexic or cancer patient on her second round of chemo. Please, if anyone has any idea what is going on with me write back or email me at kerrazygirl@msn.com.Thanks. Take care.JenMy mom has a narrow esophagus and she sometimes gets "blockages" while she's eating things like bread. They had to do a surgery to widen her esophagus in her middle age. Her brother had a narrow entry passage to the stomach and they had to do a surgery to widen it too.But it sounds like more is going on here than meets the eye. This article I found seems really good: I know they did not find that your condition was caused by an esophageal motility disorder but this article says that symptoms like you have (the trouble swallowing and chest pain) can be caused by "systemic diseases" and these are the ones talked about on that webpage: scleroderma, diabetes mellitus, alcohol consumption, psychiatric disorders, and presbyesophagus. It said diseases that cause esophageal motility disorders they are referred to as secondary motility disorders. Check out the link.This may not be helpful but I like to research information anyway. This seems like an unusual case if doctors are not thinking that it's an esophageal motility disorder!God bless.
    Anonymous 42789 Replies Flag this Response
  • A video swallogram is a real-time fluoroscopy of you eating meat, drinking water, chewing etc. They mix a little barium into it so it will show up. You would be sitting up. Actually it is kinda cool test as most people never see what their muscles and teeth look like when they are eating. As your problem is in the throat, the baby could be double shielded and they would just view your throat. (yes, there would be some scatter radiation to the baby). But you could also wait until the baby is born. Maybe the internet has a film of the study.
    rad-skw 1605 Replies Flag this Response
  • Hello, My Wife has Dermatomyositis( an autoimmune disease) after chemo,it is muscular disfuntion due to an overactive immune,causing severe swelling of muscles,in my wifes case all her extremeties ,including throat,it pretty much paralyzed her, until they got an immonuglobulin(immune suppresant) in her system along with other( symtomatic drugs,for other symtoms) Read on immune disorders.Johns Hopkins is the best with these autoimmune diseasesTake care & God Bless
    Anonymous 42789 Replies Flag this Response
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  • I was having the same issue at the beginning of this summer and went to an ENT. After a CT he reccommended throat surger to biopsy me and make sure it wasn't cancer. It turned out not to be cancer so far. I went to speech rehabilitation and she thinks I have LPR which is different than GERD and you don't have the hearburn symptoms. It can create swallowing difficulties. Please check out this website I found and see if applies to you at all. It explains the difference between GERD and LPR.http://jaapa.com/issues/j20050801/articles/lpr0805.htmThe recomendation is to take a ppi like nexium 30 minutes before your largest meal and it should heal the tissue in 3-6 months.
    Anonymous 42789 Replies Flag this Response
  • I was about to ask if you have been pregnant then I kept reading and you have. I have not been in for any testing yet but have had to make a couple of 911 calls and even swallowing water 'girgles' down my throat. I told my Midwife the same thing...it's been about 3-4 years now. She went searching, doing consult after consult, and had one woman stop her in her tracks, telling her to look into postpartum as apposed to allergies, tumor, etc. The woman said that postpartum hormones make your throat very dry and cause the mussles to 'clinch down' on what is in your throat. This is as far as I've gotten and have a general physicians apt today. I am 27, have been pregnant 3 times in 4 years and am 7 mo postpartum right now weighing in at a whopping 125lbs at 5'9". Even strangers can't seem to hold their tongues in regard to how I look. I say that to say I hear your struggle and though I can't post any answers yet I am hunting too. I will stay in touch. Congratulations on your new baby.
    Anonymous 42789 Replies Flag this Response
  • You should try getting tested for H.pylori it is a bacteria in the stomach that can cause severe swallowing difficulties.
    Anonymous 42789 Replies Flag this Response
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