I'm so desperate and I'm hoping someone can shed some light to help me....I'm at a loss and scared that no one is taking me seriously - - - this is not all in my head - - - this pain is real and these symptoms are real.
I recently got married (may 2007) and in August 2007 we found out we were having a baby. In the meantime, I was going to school and trying to maintain a 4.0 average, working on a house (that ended up falling through) and working 40 hours a week. I was very happy to get married and very excited about the baby - especially when i found out I was having a son.
In January 2008, I started experience the inablity to swallow. I swore my throat was closing up on me. I could not eat, swallow food and ended up having severe panic attacks because of how I was feeling. I went to the ER and they did the barium swallow....nothing was found. They did a CT scan and diagnosed a sinus infection and I was given antibiotics. They tested me for Lyme disease also. A week after the start of the antibiotics I was back in the ER for severe abdominal pain and throat closing feeling. They switched my antibiotics and I was still not really eating during this time...really only pudding, jello, chicken broth etc. The panic attacks were terrible because I swore my throat was closing up on me. I ended up in the ER a total of four times. One doctor told me about "globus hystericus" and told me everything was in my head and another doctor told me it was a form of reflux = reflux laryngitis (LPR). I went to a gastrologist who looked into my stomach and it was normal - no reflux found. I went to an ENT at a swallowing disorder clinic and she told me that I had a form of reflux called LPR. She looked at my swallowing and there was no obstruction and I was swallowing fine despite how I felt.
I've ended up in the hosptial at least six times since March 2008. I've been treated for dehydration etc. I've received a battery of tests and had sinus surgery to clear up the chronic sinusitis. I've had several CT scans, 2 barium swallow tests, a colonoscopy, several types of blood work including checking for vitamin deficiency and growing cultures, checked for parasites, I've had a Hida Scan done for my gall bladder function, I've had the gastrologist look at my stomach twice (and they only thing they found was a mild case of gastritis - they told me no reflux was found) and I'm going for another test where I swallow a little pill with a camera in it.
I have been given Nexium (was taking it twice a day but now only once), I've had several rounds of different antibiotics (both in and out of the hospital), large doses of anti-inflamatory drugs, anti-depressant drugs, anti-anxiety drugs, anti-nausea drugs, muscle relaxers, paragoric for my stomach, I've used a nettipot for my sinuses, mucinex, zyrtec, claritin. I've tried drinking aloe vera, taking licorice pills, taking probionics (sp?) for replacing good bacteria. YOu name it, I've tried it.
My symptoms since January are...
Constant mucus in my throat
Constant throat clearning (feel like I'm choking on it)
*originally I thought this was from the sinus infection but now the infection is gone and sinuses are clear...why is
it still there?
inability to eat, feel like throat is closing
NO appetite (I've losted 65 pounds since January 14th)
abdominal pain, nausea
bloated feeling as soon as I try to eat something
tightness behind my chest bone
Most recently I can add...
I have had good days where I thought I was on the road to recovery. Example, last week my doctor hospitalized me for dehydration and I had a good few days in the hospital. I came home on Saturday and was feeling very postive, I was eating and feeling pretty okay...not 100% but much better. Then I woke up Sunday morning, sick to my stomach and having abdominal pain again.
Everyone is telling me it is anxiety, but I'm not buying it. I really feel this way. I'm afraid I'm going to die because no one is taking me seriously. I cannot eat and if you cannot eat you die. I will agree that I'm depressed....I'm depressed because of how I feel and what is happening to me. I wasn't anxious or depressed before this happened to me. I woke up one day and couldn't swallow!
I don't know what other tests to take and I'm scared I'm going to die from whatever this is that they cannot find.
I understand your frustration with doctors - however, what helps me is to remember they are not God and they are not perfect - as long as they are still running tests then at least they are still looking. Here are some questions and thoughts for you.... One question - do you only have difficulty swallowing when you are eating or does it happen when you are not eating too? Do you have difficulty breathing from the throat closure feeling or only that you can not swallow your food? My Papa and my boyfriend both have a condition called esophagial restriction (spelling??) where their esophagus is thickening and narrowing and their symptoms are like the ones you described. It is very scary for them too. They have both had surgeries to stretch it back open. My Papa has had to have three of them. Also...the fullness after just starting to eat and the nausea sound very similar to my condition which is called gastroparesis. Have they done a gastric emptying study yet? That will tell you if you have gastroparesis. Basically, you eat a sandwich that has a contrasting dye in it (usually egg salad) and then they put in a ct scan machine for about 90 min and they watch the food move through your esophagus and into your stomach and then they time how long it takes for the food to leave your stomach. Hope this info might help.
I have some of the same symptoms you have. I have bloated bowling ball feeling in my upper abdomen after eating anything, or sometimes without eating anything. Chest pain behind my breast bone and pain in my upper right abdominal area. Also feel like a band is around my diaphragm making it hard to breathe. I was afraid I was going to die but I haven't yet. I also have panic attacks. I have had just about every heart and GI test known to man. Here are my observations that I hope will help you. Anxiety can cause some of these symptoms. They are real, you are not imagining them or making them happen. Anxiety can make them worse too when they are caused by something else. You said you are going to swallow one of those throat cameras, well, see what that shows. When you take anti anxiety medications like xanax or ativan do you feel better? Does your throat feel open? That is a good indicator of whether it is caused by anxiety. Another test to consider is seeing an ENT, have your vocal chords checked. I have a friend who has a vocal chord disorder that I can't think what it is called and she constantly is clearing her throat, and coughing, AND it sometimes makes her throat feel like it is closing up. She also coughs from it when it gets bad. It also causes her to have throat spasms. Anyone would panic with this happening. Did all this happen to you while you were pregnant?
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