Seriously looking for answers and help with severe gerd and lpr please!!!

[Serenity]

I know i am a member on here, and i gave you some advice on your threads and even on the posts on here. I am hoping you are having better luck and i eased your mind and worries and gave you all the right info you all wanted . Anyways here is what i am going threw. I have had trouble and difficulity swallowing and eating and drinking and even my own saliva. for 3 mths now and cont.. I have had a barium swallow test for the . dysphagia. i had one with me eating food and with barium on it , and it was a video one .. second I AM IN PAIN MASSIVE. went to 3 ent drs all say it is my larynx that is inflammed and swollen due to the acid from my stomach, causing it to backflow up to the back of my larynx. i had the fiberscope done 3 times with all 3 ents . even one ent showed me it on video as he was doing it . i have tried prevacid, aciphex, nexxium, priolsec, and protonix. and even the reg liquid antacids. nothing works at all. i even gargle . it feels as if something is stuck in my throat, and choking feeling, and the larynx area feels internally like a huge bulge . i have had bouts of gerd , before when i was age 16 up till now . but this is unreal and unliveable type. my case on all this is . so yes i have lpr . what tests to be done dont know ? they wont tell me ? the ents. i as well am still taking prevacid 3 times a day a high dose. it is not helping at all . i been suffering now 3mths and going on with no answers, i am losing weight , losing my mind , losing my voice, it is hoarse , and raspty , and cuts in and out , and sounds awful , i clear my throat alot , and i cough at night , i am feeling nausea , and sick to the stomach, and as well i am .Im trying to make this short but it is hard . cause i have alot of history , and i have not seen any posts as my symptoms i am having . yet .:( anyways i have severe gerd and lpr as well . what a great combo huh ! i have upper abdominal pain and lower abdominal pain , and i dont burp i have air burps even if that . and im in 99% of the time in pain. sleeping is hard to do .. when you are so very very umcomfortable in gerd and lpr. as well i have nothing to upset the gerd as in diet wise. and i elevate as they say to when i sleep for a few hours i do get when i sleep. i have shortness of the breath , and no i have no asthma. it is not anxiety . have a pysch it is all real . not pyschosomatic realted. as well i have a hyperthyroid and all. but that is another story .. this i am more concerned about and with .. i have an endocrine dr who is taking care of the thyroid and it is not that. my drs are and gastro and cardo . and im fine with all ends. just not with the gastro side and ent side i guess. i feel as if my airway on my upper abdominal is cutting off my air way . and it is and i get a knawing , stabbing pain that does not go away . only tests they are sending me for is these.. which i had before .. upperendscopy and a hida scan with cck to rule out gall bladder. again . both tests i had last yr . but it was nothing as severe as this is. and has been. for the past couple of days when i wake up , i have drool like stuff out of my mouth , yet .. not being disgusting , but that is the best way i can describe it , it is from my mouth all over and on the way down to my chin. i have ever ever had this ever ever, so it has to be acid flowing out when i am asleep and wake up cause there is no none on my pillow. my nurse friend as well. as i am a nurse to with all 3 degrees in rn , lpn, cna. and even my cardo said that is is my acid flowing up and out , and u can aspirate. if it proceeds .. anyways testings my gastro is sending me for sorry for the long dragged on story. are the hida scan with cck . and upperendoscopy, and upper gi series of me drinking barium to see if my esophageal is delayed when swallowing. i asked for it and eventually a ph test .. is there any other tests for lpr ? or the esphogeous? or pharynx. and larynx. and most of all my les muscle to get to the bottom of this all . any help would be greatly appreciated and so kind of you all .. im lost what to do . i need to get and see if my pharynx and larynx and my espogheous and my les is ok . and all .. and are there any treatments.. im barely hanging on here .. Please help .. btw what is a pharyngeal Probe ? and its uses ? and what is it about and look for ? and is the Ph Test awful .. ? and what is about i know it measures the acidity , but what else? and what does it feel like. and i double over as well to. see this is very complex and very trying.
PLEASE HELP SERIOUSLY . or e-mail me .. ty you very very much .. to you all i feel your pain and suffering :( i will pray for you all :)

- Serenity

[karenz]

for starters i want to say how sorry i am that you are feeling so awful. It is a rough time when you feel so bad and there are no answers and it seems as if you are getting shuffled from doc to doc. First of all i have LPR and know the terrible throat pain you are going thru. I has the wheezing and very painful larynx pain that lasted a long time before they started me on PPI's. I dont know how long you have been on the 3x a day doseage but i know for me it took 4 months of 2x a day to start feeling any real releif, so perhaps you need more time on the PPI's. Of course try all the lifestyles changes .. raise the head of the bed all that as well. what are all these tests of yours showing??? It seems as if they could do something else if you are doing all this with no relief at all?? I have heard some folks are on a mild anti anxiety med to help them thru as well and that seems to give them some relief. Perhaps metnion that do your doctor as well. please keep us posted....

[Serenity]

Well yeah i am getting the run around, the gastro did an upperendoscopy and afterwards laughed and snickered and all , he thought i guess it was not important that i can barely swallow. or eat . or drink , and am sick for now going on 4 mths. i have had gerd but not severe gerd . like this ever . nor have i ever had lpr . where my larynx was inflammed and swollen . basically , i am getting the run around. and i am getting fed up . and i do take a mild tranqulizer from my pysch. but when you have all what i have going on you cant sleep or relax at all . you just want to die and give up .. but something , or someone is pushing me to get my answers and answers i demand . and i have every right to know.. now he is sending for a barium swallow which i told my gastro showed nothing in oct .. but spillegage in the pharynx and larynx area . but he is still sending me for a no nonsense test . gold figure huh ! grrrrrrrrrr. he said he took biospys of my esophagus. but still is not helpin me at all . he said it is all mild and minor .. which it is not !!! and it is not pyschosomatic either at all .. and then i got for a hida scan with cck on dec 9 . as to why dont know .. my problem is my swallowing , my esophagus and my larynx and possibly my pharynx.. so yea i can change gastro dr but i dont want to start from scratch im sick as a dog now . this is so uncalled for and so unjust .. im thinking of getting a lawyer , soon to get some advice on all this medical negliance. that i have been getting you know.. My cardo is a doll :) he is a gp as well . he says and agrees it is my gerd acting up, and he is getting aggravated with the gastro and my cardo is the top notch cardo in ny . and nobody talks him down you know what i mean .
im asking going to ask for tests like this to see what in the heck is going on. and he better do them . or write them out .. i mean how much can you suffer ! you know this unreal . i will be asking for a 24 ph test probe , and i will be asking for esophageal manomentry, and pharyngeal probe, and intra- esophageal ph test probe movement. ( during eating and talking and swallowing and phonation) which is a video radiographic test . and i had gerd for yrs since i was 16. and never like this! and it is only gving worse :( and so is my lpr as well . :( i been on prevacid and nexxium , and achiphex, and protonix, amd prilosec none work trust me .. and i take prevacid still 2 times daily . I see it this way im sick as ever , and i deserve and deamnd answers and to be a guinea pig i will not be . do testing on my esophagus , and all and so on.. nothing works and nothing helps at all , even raising my head elevation .. but i swear if it kills me i will get to the bottom of this and soon .. and my hoildays are ruined:( and im in misery , and in pain, all the time from gerd and lpr .. so sick as i am i will get to the bottom of this .. and i am soon getting a lawyer .. for not assessing my medical needs or complaints .. and negilance and my insurance company is going nuts with the tests , cause some are not what my dx is .. anyways .. i shall keep you posted .. i hope you feel better :) my prayers and thoughts are with you . oh last but least . after the upperendoscopy i had that stuff out of my mouth and i asked him , and he said well hmmm ..
that is phlegm or acid , i dont know . but i know that is not good .. what a help huh he was .. take care ..

Serenity_ :)

[Katherine]

I know just how you feel. First of all, you will need at least 4-7 months to heal your throat. What you are probably feeling now, is just residual pain from the acid hitting your throat when you had the attack. I found the best thing to do is take ppi's 2x a day (I take protonix 40 once in the morning, once before the evening meal). Believe me, we have all been there with this cursed disease! Raise the head of your bed; do not eat anything acidic - coffee - even decaf! all coffee is acidic! No tomatoes, peppermint, chocolate, high fat foods, spicy foods, etc.
Hang in there - you are covering all the bases with the tests you are having done - ask you dr. to switch your meds. That might do the trick.
I just had a 24 hour ph done; it was a horrible test. You have a small tube down your throat for 24 hours. I don't really understand the point of this test though, because if you are not having an acid attack in the 24 hours you have the test, what's the pont?

[Sharri]

Oh my Dear, I do know how you feel! My symptoms started the same back in August. You just want to die and it is incredibly frightening. I had all the sme tests, ect. The single most impportant thing I can tell you is that is does take a minimum of 4 months to even begin to feel like you are healing. I lived on Slimfast and water for 6 weeks, and even then there were times I would choke on my own saliva. I lost 23 pounds in 5 weeks. I tried salt water, etc..nothing helps in the beginning. Its December dn I am just now able to eat soft solids. But at least I can see the light at the end. I was given Prevacid twice a day, but it dried my throat worse. So now I take Protonix in the mornign and Pepcid Ac at night. I also take Zelnorm. I don't have IBS...but my gastro thought it may help as it speeds digestion so things go through your system faster. It did start to make a difference after about a month. So please, please hang in there and try not to give up. I remember crying because I was so hungry, being scared to death I would choke, and being so short of breath it was hard not to panic. All of these things are finally , slowly improving. But the ENT told me minimum 4 months to begin healing, and the gastro said 6 months. Try to remember that, and keep taking your meds and doing all the right things. And above ALL, you must try not to panic as hard as that is. It only makes it much worse. We will all be thinking of you...:)

Take Care,
Sharri

[Serenity]

Sharri ,

Yeah i know i am now going to a new gastro dr , cause my other gastro dr did not know what to do . and what tets to run and all , he was running tests that had nothing , to do with my larynx and pharynx and my espogeous, and les and my espogheal motility. so now he is reffering me to a new high better or suppose to be high tech gastro dr . when i get in there i am suppose to have the ph probe .. and the esophageal manometry tests , so far as he is asking him to do . as well , yeah i choke on my food now and even water , it is awful , ur right though it is hard not to panic , or freak out , or even feel like this will ever end.. i am still on prevacid 2 x daily and i told him it does not help neither does nexxium or acpihex,. the one you mentioned protinex , i was on that last year . but maybe this new gastro who will be doing more high tech testings and all and maybe might give me and tell me what is going on and how my espohageal motility is . :) im hoping , im hanging in there :) i wont give it trust me :) i still eat and drink cause you have to .. but i eat small foods and barely that . it is diffucult it at times now comes back up and i drink water to make it go down and it does at times or gets stuck . and i am not sure if i have ibs? my endocrince dr says thyroid can cause that . so maybe i do and maybe i dont . but i will be sure to ask about the zelnorm , i have heard aout that . :) and the prevacid just plain sucks . and isnt doing nothing , so maybe like you said it could be drying out my throat .. i will be sure to ask about it . thanks for the tip .. :) i am soon after seeing the new gastro dr i am going to make an appt with the ent again , to see why this is all happening and what he can do and says. cause see i have a thyroid problem to as well.. among other health problems. but i never had this problem before nd now it is 4and half months like this with no answers , or comfort , or results, or proper tests. im hoping this new gastro will run all tests for my esophageal motility and all , and my les and , larynx, and pharynx, i want to get checked out as well. to be safe.. but yes i will surely but , it seems like an eternity get to the bottom of this all. :) i went for an upperendoscopy and it was ok the gastro said . and i have no gerd .. hmmm thenwhy am i on prevacid and having this . he took biopsys so he says and all looks good and normal .. ok yeah right!!! he said it was phlegm not acid coming out of my mouth and that is the ent job . gold figure huh !! what a gastro he was .. maybe this one is and will be better and get to the bottom of it and so will the ent . after i go see him first and have testings done.. but yet after the upperendoscopy my gastro said it is esophagitis .. but i have no problem right lol .. jerk .. i appreciate your concern and understanding and support and help , and most of you you taking time out to reply to my post thanks .. i will keep you posted .. thanks again ..

my prayers go out to all who are suffering :)

i will pray for you all :) we shall defeat and get some relief one way or another . where there is a will there is a way :) and if you have belief and faith you can do anything :)


Serenity :)

[Sharri]

Hi serenity. Believe me, I really do feel your frustration. I still have days where my throat is dry and feels like its squeezing shut, or days when I have alot of mucous, and that damn lump, and a sore throat. Don't give up!! I have had some success with the Protonix in the morning and Pepcid AC at night. I hope the new doc is better than the old for you. Alot of people here listened to me when I felt as bad as you. This message board is a lifesaver, or a sanity saver at the very least!
Keep us posted....

Sharri

[Serenity]

Sharri thanks for your post again , your kind and thank you . yes it is more than frustrating , it is well i sure you can imagine every word in the book. as of current i am getting my thyroid out went to endocrine dr . had thyroid problems for 3 yrs and wasnt controlled by meds and cant do steroids , or iodine burnout . so she told me the dr to go to an ent and have it out soon . but she also mentioned for me to have him see my throat as well the ent . the thyroid has to come out 2 reasons why , 1. it is enlarged and 2. if all fails they have to .. as far as the the rest i will have to get back to you on .. still waiting. take care sharri :) by the way i do agree the boards are a good way of communicating and a way to vent and know others suffer and what can or could be done if not done already .

bless you sharri - Serenity :)

[Robinbird]

My name is Robinbird, and I've been on this site for over a year I'm sure. I've had your problem with your throat, except for mine has lasted for 18 months now. I've had all the tests (and btw, ask for the dual probe, don't settle for anything less, it shows how bad you're refluxing) and taken all the ppi's that didn't work and finally had the surgery. Yes, my throat is about 10% better, but I still live in horrible pain daily.

I have prayed and prayed, in fact, I think half of Florida is praying with me. The fundo was extra bad in my opinion...and I don't even know if I'm still refluxing...all I know is that I still have really bad pain.

I've been to 20 docs as of this past week, I've tried ent's, md's allergists, chiro's, and speech therapists as well as (I'm now trying) neurological doc.

I will be praying for you, as I know how you feel...even today I thought of suicide once again, although I know that is NOT WHAT GOD HAS FOR ME! I continue to pray and ask for forgiveness for my unbelief, because this has really taken it's toll on me.

Please, keep looking up and let's keep encouraging one another!
(I Thes. 5:11)

Robinbird :)

[Serenity]

Hello RobinBird , I am from New York .
anyways getting to my long annoying baffling problems i have got going on with me . i have seen ents and gastro drs and all dont know what it is . It is very frsutrating. I mean i am suffering and i get the shove or wait or hold as if i am a guniea pig , thats what kills me inside and out . So i do research myself on what it might and could be and all. I did have an Upper endoscopy done , showed nothing my gastro dr said and he even took biospys and he said they were normal and negative, i even had the barium swallow test done with foods and liquids which was a videoradiographic, that was back in oct 28th . It showed some spilleage in the pharynx and larynx, but they said at the hospital the tech said nothing to worry about . But yet i still suffer . My problem began oct 1st . at first i though hey it is a cold , or something you know , with weather changes and all , my only symptom then was a sore throat and hoarness. so i blew it off then i decided to go to weeks later not to much longer to go see an ent dr he said it was my larynx was swollen and inflammed due to stomach acid . so he can me rhinocort aqua and a prescibed me prevacid . he said it will get better soon .. It didnt it got worse . i went for the barium swallow test with liquids and foods in oct 28th. and had the upper endoscopy in nove sometime . Meanwhile i have a hyperthroid which my endocrine says it needs to come out as soon as possible , but by no means am i going to have my thyroid taking out yet , so im postponing the surgery till i find out what is going on with esophageal wise or les muscle , or esophageal diseases, and so fourth . you know what i mean . So now my gastro dr is reffered me to another higher tech gastro in new york . who is triple board certifed . But hence this it isnt till jan 20 th :( as if i need this you know . i have alot going on as is and dont need to be waiting . so this new high tech gastro who ius triple borad certified will be having a consulation with me on that day and running tests and all . Thats fine and dandy , but you know i choke even when swallowing small pills , or sometimes food, or it feels like lil bits or stuck in my throat somewhere , and ughhh .. and at times i choke on water . it is a misery to eat or drink or to sometimes wake up and not know what your going threw and why and how come we all have no answers. you know . so we get down and out , a lil depressed cause of not knowing , and we cant be our happy cheery selves to others cause we are in pain and so on . and we kinda just dont want to be around anyone at times . we rather be alone and be miserable and in extreme pain . ok see my problem i have is swallowing , and the ent 2 of them said it is back flow of acid up into the larynx , which is causing it to be inflammed and swollen. when i told my gastro that he said no after the Upper endoscopy he said it was Phlegm , But my primary dr said he checked me for it . So id ont know anymore the ents are battling out with my gastro . not the new one i will be seeing on jan 20 if it doesnt get pushed up sooner. i mean dont get me wrong i dont hate my gastro , i know it is all complex and trying , but your body can only take so many tests and being in pain for mths it tends to wear you down. you must know what i am talking about. I had bouts of gerd when i was 16 and took pills . but nothing as far as worse or extreme like this not even close. They want me to havea 24 ph test probe and a manometry test done and so on and maybe a another barium swallow and all and who knows what else . they also want to rule out the gallbladder as well , caus ei get this upper abdonimal pain and it cuts of my airway and i double over in pain and feel like i want to regurigate , or throw up , but i cant and it kills , they ruled out ulcers it is not that . what that is i have no idea they say it may be a Hiatal Hernia . we shall see . I have tried all the meds like prevacid , nexxium, protinox, and aciphex , nothing works.. and same as the liquid antacids . even gargling doesnt help at all . but the pain and immense how it is with swallowing and and the upper abdominal pain is a kiler literally . You just want to say i give up . but i know god is on my side . and he or she will carry me threw . i would like to just get to the bottom of it all and then have my thyroid out afterwards if i can . yeah all my friends online in chat who i have known for 5- 7 years are all praying for me , so are my all my reg friends and family and relatives and i am praying as well. and sleep how can they expect you to sleep good when you are having stuff fill up in your throat, as you lay down . ughhhh!!
alls i want is RELIEF AND ALLEVIATION. OF some kind or some way and some answers.. But i will keep you posted .. my prayers are with you :) thanks for answering my post . :) take care or try .
ps . i did hear my gastro say maybe surgery for it, not sure yet we shall see what comes next. so i will keep ysa posted when i see the guy he referred me to . But i will going to another ent dr to see if it is it phlegm or acid and if my larynx is still swollen and inflammed and so on . that is jan 6 or jan 14th i forget, anyways . i love the bulge feeling in your throat and feeling awfull. ughhh ..

ok i bored ya enough lol .. take care RobinBird :) prayers with you all :) - serenity :) i will keep u all posted ..

will be praying for you . :) Serenity