Hi everyone. I have had swallowing problems for about 4 1/2 years now.
I am frustrated and very depressed. I've seen 2 gastroenterologists now and I am working on getting health insurance so I can go back and keep getting treatment and hopefully a diagnosis someday.
I am so scared that I won't live another 4 1/2 years if this isn't diagnosed and doesn't stop soon. I can't eat solid foods, I haven't since this started, I can't eat hamburgers, hot dogs, any bread, pancakes, anything like that. The food gets stuck in my upper throat going down and it scares me to death. I don't want the food to get stuck and my worst fear is to choke to death. Am I being stupid and paranoid? Does anyone else feel this way?
The first gastroenterologist I went to basically thought I was crazy and it was all in my head. I lost so much weight from not being able to eat that he accused me of being anorexic even though I begged him to find what was wrong so I could eat normally again.
The last gastroenterologist I went to seemed to be more understanding and started the testing all over again but then I lost my job and thus lost health insurance so I can't go back.
He did lots of blood work again testing for everything chrohns, liver malfunction and the works. Everything came back negative. I told him that my first doctor did a hida scan and it showed my gallbladder was filling up too slowly but he didn't remove it, my new doctor wondered why. His guess is as good as mine. I wonder if that would solve some of my problem. He did a endoscopy that showed two spots in my esophagus very narrowed and a hiatal hernia in my stomach. I got pictures of my endoscopy showing the hernia and the bulges and extreme bright redness in my stomach. My esophagus looked normal and pink in the pictures except for theses two very narrowed areas. He was worried to dialate because he didn't want to tear my esophagus so he prescribed a inhaler to open up the strictures in my esopghagus then after that was gone if the inhaler didn't work he'd go back and take another look and possibly dialate then. Between that time I lost health insurance and I can't go back. The doctors office is calling and sending letters now trying to collect on what my last insurance didn't pay including the expensive endoscopy that insurance didn't fully pay for.
My symptoms are:
Burning in my stomach constantly
Occasional feeling that is is coming up in to my lower esophagus.
Tight squeezing feeling in my upper chest and throat when I swallow.
I doesn't just feel like its my esophagus when I swallow in my upper chest, it feels like it's actually in my chest and the muscles around my throat area that are causing swallowing problems too.
Diarreah several times a week
I still have the inhaler, I stopped taking it halfway through and still have 88 puffs left out of 200. I'm suppposed to take it twice a day, 2 puffs a day.
I'm going to start taking the rest of it today.
He prescribed it because he said allergens can cause a build up of white blood cells in my esophagus which when he did a biopsy this was my case and said the inhaler and the steroid type drugs in the inhaler would prevent this and hopefully relax my esophagus.
I also take extra strength Gaviscon liquid to help the burning in my stomach.
It sometimes helps for a while and sometimes not but it's all I've found that helps and I can't swallow pills so this is the best option for me at the moment.
Does anyone feel the way I do? I just want to eat normaly again!
I'm scared and I don't know what to do.
Hopefully I will get insurance very soon and be able to go back to this gastroenterologist for more testing and a final solution to my problem
Thanks for reading this and I hope to hear soon on your suggestions and related situations.
I feel your pain, as I have been suffering similar issues. I choked on a hotdog, then steak, then some chips, all in a matter of two weeks 3 years ago. Since then, I had choking bouts every now and then, leading to the point of completely eliminating these foods all together.
I had a barium test done last year, which did not reveal any abnormalities. Truth is, I dont suffer from any heartburn or anything. Prior to eating, I felt a lump in my throat feeling, which actually went away after I finished my meals, leading me to think it is all psychological. And I think that is it - I just felt traumatized by m y choking bouts.
My mother thought I was crazy and never left me alone - she would stay over my plate and was always critical of my eating habits, claiming I eat like a 5 year old. I lost some weight, but was very skinny to begin with.
This happened suddenly to me, and I take it to you as well? I was never told I had a hernia, but it is very common that those who suffer choking have this. Have you done a baruim swallowing test?
The only thing I will tell you is what people tell me - just eat slow and chew your food. What foods are you eating? How do you supplement your nutritiion? Just eat slow and as often as you can.
Maybe it might be psychological? Have you been stressed out about things? Just wanted to say, I'm in the same boat you are - take it one day at a time. You will overcome this. Good luck.
Hi Candi,
We have been going through a tough period too, you might want to try to get in touch with a person doing a Clinical Trial on ASPIRATIONAL DYSPHASIA
There are Clinical Trials both here at University of Arkansas for Medical Sciences and at the National Instututes of Health in Bethesda MD.
My friend was fine one day, and then came down with a case of Aspirational Phneumonia. The food he was going down, instead of into the esophagus , into the throat into the lungs, which caused his phneumonia. That was in September of 2007 he was in Intensive care several times during his 41 day stay. He has had nothing but tube feeding and also for water since then. Nothing by mouth. His own doctor told him that he was not aware of people having been on the tube to get off of it completely. Needless to say, we were devistated by this news. But kept on searching for hope.
His daughter went searching and found these two Clinical Trials listed for swallowing problems and we were lucky enough to have a young man , Gary H. Mccullough PH.D., CCCSLP at the University of Central Arkansas in Conway Arkansas, who is conducting a clinical trial on this problem and we have been doing therapy with Dr. Mccullough for only a short number visits.This is the third week, and he is able to have yogurt (tastes like steak to him), and jello (tastes like nothing to him as he doesn't like jello). After this coming week there will be a few (2) weeks of his doing the exercises he has been working on on his own, and then resume some more training learning how to swallow without aspirating and exercises in the swallowing process. Perhaps it will be mashed potatoes and then the ultimate in food, a TACO from his favorite restaurant.
The thing is to not give up, or give in, keep searching for whatever help you need. Dr. Mccullough is a professor of Speech-language Pathology, Or perhaps one at your largest hospital.. A call to the hospital administration may be a help, so you might want to start with that. The problem we have found is that not many Doctors, unless they really are interested in this problem, don't have any ideas on what to do, to whom to refer you, and certainly not how to treat you. A good internal medicine person would probably have a suggestion but not your PCP, unless you are lucky to have one like my own.
My very best to you in your search for help.
Arlene
If the doctor said that you have a problem with white blood cells building up in your throat causing all of this then you have Eosinophilic Esophagitis. I don't know why they wouldn't have told you that. It is treatable, but sometimes, it takes more than just the inhaled steroids to bring down the inflammation. I feel your pain. I have been on a liquid diet for going on 6 months, thankfully I just got insurance before all of this started. I am starting to improve, but its a very slow road. I have nearly lost 100lbs! I hope you are able to find some relief.
This is Arlene again,
When you are able to seek help again, you might try an AUTOLARYNGOLOGIST, an ear/nose and throat doctor....The other doctor we were told MIGHT be of some help is a Neuroro Surgeon... There are several things in the throat that can go wrong and cause your type of problem.
Re: Swallowing problems..Upper throat 
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