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Old 06-29-2013, 08:18 PM   #1
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Betsy7473 HB User
Dysphasia

I have had difficulty eating all of my life and I'm 39. I have always eaten slow and take little bits and little sips of water. Last June my worst nightmare began . I couldn't swallow anything at all! Not even water! I had to spit everything out. I was losing so much weight and was so scared. I went to every dr. Imaginable. I had every test done. Nothing physicAl showed up which was good, but I was getting so thin! My primary card dr suggested going to an eating disorder clinic for "refeeding" . I had a feeding tube for a while to gain some weight because they couldn't figure out my problem. I was there 8 weeks and gained enough weight with the help of anti anxiety meds so I could check myself out. I went home and wax doing great! Almost up to a normal weight again. Last week I started having trouble swallowing again. I don't want this to turn into what happened last time. I guess this is something I will have to deal with all my life. I just want to eat and drink like a normal person! Anyone have the same problem? I feel like I'm all alone!

 
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Old 07-07-2013, 02:58 AM   #2
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no1veins HB User
Unhappy Re: Dysphasia

I have Dysphasia also. I have not done the modified barium swallow test because I can't stand the taste of the barium. You would think after all these years the medical people could think of a better flavor. I have posterior and anterior cervical bone spurs as well as 3 thyroid tumors, and severe TMJ. I have a rare condition called Lichen Planus. My immune system is my mucousa as a foreign body. Inside my mouth and throat looks like rare hamburger which also causes me to chock on water and food. Some foods like certain candy closes up my throat and I feel a chocking sensation. I don't know how old you are but if you have problems with your neck maybe you can talk to your Dr. Also I keep a journal of everything I eat so I can go back over what I have eaten or drank to see if there is a pattern. Vickie

 
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Old 07-07-2013, 04:08 AM   #3
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Re: Dysphasia

Was an endoscopy and esophageal motility test done? Have any tests for scleroderma been done? When you say you've had dysphagia (dysphasia is difficulty speaking) all your life, did it start in childhood? Do you have ANY other health problems, particularly neuro-muscular? What specialists have you seen? Sorry for all the questions, but that info would be helpful.

 
Old 07-14-2013, 01:45 PM   #4
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Terlin HB User
Unhappy Re: Dysphasia

Quote:
Originally Posted by no1veins View Post
I have Dysphasia also. I have not done the modified barium swallow test because I can't stand the taste of the barium. You would think after all these years the medical people could think of a better flavor. I have posterior and anterior cervical bone spurs as well as 3 thyroid tumors, and severe TMJ. I have a rare condition called Lichen Planus. My immune system is my mucousa as a foreign body. Inside my mouth and throat looks like rare hamburger which also causes me to chock on water and food. Some foods like certain candy closes up my throat and I feel a chocking sensation. I don't know how old you are but if you have problems with your neck maybe you can talk to your Dr. Also I keep a journal of everything I eat so I can go back over what I have eaten or drank to see if there is a pattern. Vickie
I have stage 3 gurd and going for a modified swallowing test can someone tell
Me in detail what's it like , Also when I drink or eat it feels like I'm swallowing air, and my my abdomin gets really bloated I have shortness of breath, try to figure what's causing this or is it my ibs-c causing the breathing problem gastro says no. I also have a histal hernia and wondering if that's the cause. When swallowing my throat tights feels like a smashing sensation and the food seams to suck to the back of throat. Does anybody have any idea.

 
Old 02-20-2014, 11:11 AM   #5
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sparklebelle HB User
Re: Dysphasia

Hi Betsy! How is your swallowing? I am 58 yrs old and have your same problem. When I was reading your post it was like I could have written it myself. Altho I did not lose so much weight that I had to get a feeding tube. I"m 5'5" and my weight went down to 102 lbs and my doctor told me IF i didn't start to put weight on I would need a feeding tube. This was back in 2010. I too had every test under the sun done and all came back normal. At my worst, I was so weak and hungry and thirsty that I just wanted to roll over and die. I was ready to give up. Just like you, I have always taken very small bites of food and have always eaten very slow. I remember the day I wasn't able to swallow liquids like it was yesterday. I had a soda in front of me and the thought ran thru my head "what if I can't swallow liquids"? And as crazy as it sounds, at that very minute, I felt like a lightening bolt went thru me and that was the exact minute that I wasn't able to swallow liquids. Here's the crazy part, IF my husband would wake me up from a deep sleep (in the middle of the night) I could drink, until my brain woke up! IT got to where he would set an alarm and wake me up three or four times a night so I could suck down 5 to 7 ensures. This is what saved me from needing a feeding tube. During the day or any other time that I was awake, I could not drink even a drop of water. It was like I forgot how to swallow. My g.p. told me right at the start that he felt that "wires in my brain somehow got crossed", but he still ran all those tests on me to make sure it wasn't anything physical. I had an endoscopy, numerous upper G.I.s, modified G.I.s, was sent to a speech therapist, and an ENT doctor. I think most of the doctors were frustrated with me. The ENT Doctor was the first one who really took his time with me (he watched me try to eat applesauce and pudding) and this was the start to my road to recovery. Out of my own pocket I also saw an accupuncturist (didn't help me) and a hypnotist, who was a BIG help. I was put on prozac, which did help somewhat, but I did not like having to take it, and with time found out it caused me to bleed, so I quit taking it. I was on a few other anti depressant/anxiety drugs over time too. I saw a psychiatrist for awhile too. And I prayed ALOT! I used to keep a diary of what I would eat in a day, and when I look back on them it makes me sick. When I was able to start eating again, it would take me over an hour to eat a soft boiled egg. That egg would be cold and taste so bad, but I forced myself to eat it. I knew I HAD to do this. The day I was able to eat mac and cheese I cried I was so happy! With time I added more and more into my diet and over the past 3 and a half yrs I gained TOO much weight! I put on about 30 lbs. Here I am 3 and half yrs later and although I am still unable to eat certain foods, steak, or anything that's too chewy, I have improved sooo much! I can now drink (most of the time with a straw) for the first few hours after I wake up without spilling anything. I suck down a lot of water and soda iced coffee during this time! I can still drink after that, but I usually spill a lot. I suck it up and out it comes until I finally get a sip down. My carpet and furniture gets cleaned quite a lot, but hey...I don't care, I'm just so thankful to be able to drink! I know this is a mental problem and I was under a lot of stress right before it all started. It is amazing what our brains can do to our own bodies. I just kept telling myself that it was able to get me in this mess, it would be able to get me out of it! At the start of this mess, I remember hoping that they would find something on one of the tests they were doing on me. Because I knew if it were mental, that I would have to be the one to fix it, but if it were physical, the doctors could hopefully fix it for me. Today, I thank God that it wasn't physical and I'm thanking Him for as far as I've come. I still have my bad days, and I always have the fear in the back of my mind that I will relapse, but I have to keep on trucking on! I'm praying that you will stay on the road to recovery too. Keep in touch and let me know how you are doing. Shelley Wheeler

 
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