Discussions By Condition: I cannot get a diagnosis.

undiagnosed esophogeal discomfort - history

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: karenita
  • April 23, 2007
  • 00:07 PM

About 7 years ago, I developed a steady dull pain in my chest area, right behind where the ribcage meets. I had an upper GI Series and was diagnosed with a hiatus hernia. A few years later, I started to develop a new symptom, at times I would have difficulty burping; it felt like there was something in the way. The problem is always with me and is usually manageable but sometimes it gets much worse, which I refer to as a flare up. About 2.5 years ago, the burping problem got much worse so I went to a doctor again. I was sent to 2 different gastroenterologists and an ear nose and throat specialist, had an endoscopy and another upper GI Series and apparently, I don’t have a hiatus hernia, so I’m back to square one. I have since changed primary care physicians because my doctor's patient load was so great, he had no time to see me.

Meanwhile, on top of the increase of the burping problem, within the last several months or so, I began to feel a pressure beneath my breastplate and as of about a month or so ago, it now radiates up into my neck along the left side, making it difficult to swallow and even speak sometimes. It almost feels like swollen glands but only on one side. Of course, eating has become even more difficult, even drinking water, and I am already quite thin so I cannot afford to go without eating. I also have a hard time taking deep breaths when it flares up. Also, there are times when my whole rib cage feels like I was injured, it feels very sore as though left over from a trauma. And when I move especially while sleeping, I do feel cracking in that central area. And it’s not exactly in the center, it’s slightly to the left and there is a protrusion, but no doctor has thought anything of that.

Right now, I am trying desperately to have my new doctor order an MRI but she told me only a specialist can do that. I have an appt. to see another gastroenterologist next month (May, I’ve been waiting since February) but I finally went back to my doctor and she is now trying to refer me to another hospital to get looked at sooner and to get an MRI ordered, even though she said her boss is frowning on this idea and she also mentioned that insurance companies try to prevent patients from having these tests because they cost $1,000. I've cost the insurance company much more than that in the past 7 years trying to get a diagnosis in myriad ways. Perhaps an MRI 7 years ago would have been cheaper in the long run. I've been prescribed protonix but it doesn't help, nothing really does.

One bit of history: I used to be bulimic and I do recall once or twice while vomiting, I felt as though I injured myself in the region of concern. I don’t know if it’s related but I did have a recurrence of this disorder around a few months before I started to feel the first symptom. But why is it now up into my neck?

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3 Replies:

  • I understand that anyone with chronic acid reflux problems should have regular endoscopies. The next stage on from acid reflux is barretts oesophagus. You should have regular endoscopies with biopsy samples taken each time. Don't just accept the second opinion that you do not have a hiatus hernia.....you have symptoms indicative of this. My girlfriend has just been diagnosed with hiatus hernia and has many of your symptoms. A Doc needs to have another good look down there via endoscopy and take samples for analysis. Get this done every 2 years at least !. Girlfriend has just bought a foam cushion that raises her bed mattress a few inches....this is supposed to help with symptoms. By the way, is your thyroid ok? If it is enlarged, which is not uncommon, it will show as swelling at front of neck at bottom (just a thought). This can also cause swallowing problems.
    kentishman 19 Replies Flag this Response
  • Thank you for the information. My thyroid tests have come back normal. How long has your girlfriend had symptoms? Does she also have difficulty burping also? What are her symptoms? I'm just wondering if they are the same as when I was first diagnosed. Although the ENT specialist claimed I have acid reflux, I really don't believe I do because I don't have symptoms, I do not have a problem with acid. I am very careful not to accept popular diagnoses without too many tests to verify it to be fact. Reason: I was diagnosed with Chronic Fatigue Syndrome (CFS) about 12 years ago when it first became popularly diagnosed, was put on Zoloft for several years but I finally went off it. Turns out I never had CFS, and despite I was told I had an autoimune disease, all tests I've had since that doctor have tested negative for ANA. It's as though it was a fad or something, no disrespect for those who truly have the illness, but I didn't. Acid Reflux seems to be the new CFS today, meaning it's popularly diagnosed. I'm sure there are people with this illness but I doubt it's as many as they'd like us to believe. I do not have heartburn or acid taste in my mouth ever. At times I just cannot burp, even from drinking water, from doing anything that might allow air in because it can't get back up. The hiatal hernia did make the most sense, I could have done some damage that caused the hernia and perhaps they'll once again tell me it is my problem. One doctor did say it sometimes does not come out in tests because it moves.
    karenita 1 Replies Flag this Response
  • Sorry its taken so long to reply....Glad thyroid is normal....worth checking as very near the problem area.My girlfriend has no problems burping. Her problems are : hoarse voice, coughing, mid upper-chest pain. Has had these for several years and takes Nexium. Hiatus Hernia recenty diagnosed, but she has probably had this for years too. The raised bed matress seems to be helping her.I am no medic, but it sound like you have inflammation that varies in intensity. Lastly can recommend taking licorice with siberian ginseng as a general good tonic. Licorice is also anti-inflammatory so might help somewhat (if you try these, stick to recommended dosages and always monitor blood pressure if taking any herbs).
    kentishman 19 Replies Flag this Response
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