24hr Probe queston

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inpinkagony
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Date Joined Mar 2013
Total Posts : 274
   Posted 5/6/2013 1:02 AM (GMT -6)   
So I got a barium swallow done, and I am due to have a 24hr probe done for my LPR, I have question should I really get this test done? I read how some people have some worse symptoms then they had before and it's making me scared to go through with it, but it does help with answering the doctors questions right? What are your opinions on this? What kind of questions does it answer exactly? did any of you who have LPR did not have this test done?

DontStealMyBacon
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Date Joined Jan 2013
Total Posts : 186
   Posted 5/6/2013 10:46 PM (GMT -6)   
If it is a matter of whether or not you want to do it, I can definitely say that when a doctor asks for it to be done, they will not help you move forward with your treatment until you have gotten it. Not a definite rule, but that's how it has been for me and most other people.

As far as actually getting it done, it won't be that bad. The tube itself will not cause too much discomfort, but you will notice it. What most people have said is they either have better or worse reflux the day they have the probe. I have had it done twice, and both times the pains were different because of the tube. The first time it seemed like I had less reflux, so it showed significantly less than I was having on a daily basis. The second one I had two years later showed a lot more, but even as I was having the test, what I recognized as heartburn was a different feeling entirely. Just be aware that you will feel different but the results can still be quite useful.

Oh and just because you know you have LPR doesn't mean that the test will be useless. There are many things that the doctors can see that are either hinted at or ruled out, so it is good to get it done.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

inpinkagony
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Date Joined Mar 2013
Total Posts : 274
   Posted 5/6/2013 11:52 PM (GMT -6)   
Oh yeah that's the part that worries me is feeling different is it like feeling of your symptoms getting worse or like just the feeling of still feeling like the tube is still there? Yeah I think I might just go through with it, because I ended up having bad day with my doctor, and what happened that made you reflux more two years later? sorry for all the questions and thanks for the help. :)
I won't let you ruin me, if there is will there is way, day by day and I shall make it.

GERD/LPR 2 months yappay! :) LOL

Roah, college student, 21

inpinkagony
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Date Joined Mar 2013
Total Posts : 274
   Posted 5/6/2013 11:54 PM (GMT -6)   
Bacon: I also want to say it's funny how both of us want to go to healthcare because of our illnesses I am also in school to learn more about this crazy disease how are you feeling these days? :)
I won't let you ruin me, if there is will there is way, day by day and I shall make it.

GERD/LPR 2 months yappay! :) LOL

Roah, college student, 21

DontStealMyBacon
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Date Joined Jan 2013
Total Posts : 186
   Posted 5/7/2013 1:07 AM (GMT -6)   
Heh, I am studying biomedical engineering hopefully to create some sort of mechanical device that can strengthen the LES. The pH probe I had 2 years ago was actually my initial motivation to choose what I wanted to study in college, because I didn't like the results I got from my first probe. I could explain everything about how long I've been dealing with reflux, but for now I will just summarize and refer to the page I wrote earlier. The first post by me is short, and then half way down the page theres an actual full description: http://www.healingwell.com/community/default.aspx?f=45&m=2706100

I had two years between my tests because I had a bunch of things come up in my life that were even more important that dealing with reflux. My first test only showed moderate results to the doctors because I sat at home all day rather than going to school to be mocked by high schoolers for then next four years. As a result, I spent the entire day inside my house and did not have any actual activity. I made sure to change this on my second test. Just word to the wise, it is hard to go into work or school with the tube coming out of your nose, but try not to spend the entire day inactive at home. On my second test, instead of going into my classes that have about 300 students each, I did it over my spring break and went speed skating. Find somewhere to go where you will still be surrounded by people, but not people that have to know you.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

inpinkagony
Regular Member


Date Joined Mar 2013
Total Posts : 274
   Posted 5/7/2013 1:20 AM (GMT -6)   
Yeah I know, they want me to stay at home, but for some odd reason I tend to reflux more at school then when I am at home being inactive, I guess sometimes the stress of everyday life can trigger more dramatic events? I think with me it can def be my nerves you know. but gosh I just looked at your previous post, and that is really interested so could be a malfunctioning UES/LES like it sends the acid back up as you do things? I think it could be nerves but I could be wrong, I feel like something somewhere is not working properly I had my barium done and it came back normal but as far as the 24hr prob I canceled it today but I am going to ask him to reschedule it I guess, feeling a little bit better. I just need something for my tongue and soft palate, you know I can not eat, talk, or breath in for long time without feeling this dryness, tingling feeling in those areas, I feel like the pepsin is like eating away at my membranes? and I want to go to my doctor but since LPR is so tricky I doubt there will be anything to change my taste budds back. or make this weird sensation go away so I can eat again, I mean it's like I can't eat anything haha! do you have any oral problems, gosh you should see the back my tongue everyday I wake up with like white coat (pepsin/enzymes) goes away as I eat but still back there. How are you dealing now? Just such awful thing we are going through gosh it's messing me up psychologically. good days and bad days depending on my mood :)

Post Edited (inpinkagony) : 5/7/2013 12:23:02 AM (GMT-6)


DontStealMyBacon
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Date Joined Jan 2013
Total Posts : 186
   Posted 5/7/2013 1:35 AM (GMT -6)   
Right now bad days are hard because the semester is ending, and I have 10 exams in 2 weeks and engineering is not easy. Lately when I have gotten a bad day in terms of heartburn, it becomes a 9 out of 10 on the pain scale and I just can't sleep or relax at all.

The biggest thing for me is this exercise induced reflux, because my valve is so loose that any bit of movement sends acid straight up. No doctor will endorse or even believe me when I tell them this, even when two pH probes have shown exact correlations to prove it. So I know my problem, and I get sent in circles, so now Im just trying to push for surgery as best I can. My teeth are getting worse because all the enamel has melted away, and I can't do any amount of exercise so I'm gaining a lot of weight. Other than that, life goes on and try not to look back.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

inpinkagony
Regular Member


Date Joined Mar 2013
Total Posts : 274
   Posted 5/7/2013 1:43 AM (GMT -6)   
Gosh so I went back and read both topics WOW WOW, you have been going through it my friend, I wish I can curse my anger for the doctors your have come across, I just want to write a long letter of my frustration and your frustration to health care system but I will have to reply tomorrow since it's 3am HERE but gosh! I will come back tomorrow with more of an reply to your journey, night my friend.
GERD/LPR 3 months. College Student. Aspiring Dietitian/Registered Nurse.

"Where there is no struggle, there is no strength."

DontStealMyBacon
Regular Member


Date Joined Jan 2013
Total Posts : 186
   Posted 5/7/2013 1:51 AM (GMT -6)   
Yep, it's 3 am here too, and I have a calculus exam in 10 hours. Got up to search what to do about this lump that just appeared on the back of my knee today -__-
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

inpinkagony
Regular Member


Date Joined Mar 2013
Total Posts : 274
   Posted 5/7/2013 3:47 PM (GMT -6)   
WOW it took me forever to find this topic but yeah it was 3am, and I hope you did good or will do well on your test, gosh cal thank gosh only math I had to do was statistics, yeah I basically felt frustrated for you because you are practically screaming for surgery but no one is willing to help, are you thinking about traveling somewhere else for help?? MY ent is really annoying me, he says he can't see me until the end of the month and I haven't been able to eat well or brush my teeth without having these weird sensations in my mouth, I know it's from the LPR because a lot people are having oral/mouth problems from this, gosh your poor enamel. I am really just about done with the whole thing, like it's really frustrating waking up to new surprise everyday with our illness.
GERD/LPR 3 months. College Student. Aspiring Dietitian/Registered Nurse.

"Where there is no struggle, there is no strength."

DontStealMyBacon
Regular Member


Date Joined Jan 2013
Total Posts : 186
   Posted 5/7/2013 5:06 PM (GMT -6)   
My calculus test went well, I should get an A. I still have to study for the biology, chemistry, and physics tests on Thursday and Friday, and then I have 5 finals next week.

How long do you usually have to wait to see your doctors? I usually have to wait somewhere between 1 and 4 months before I can schedule any appointments or tests. For this new doctor that I started seeing in January, the average time frame is just one month, but things have been moving very slowly. The first appointment was set up several months in advance. At the first appointment she recommended that I get a barium swallow and redo my endoscopy and pH probe since it had been more than two years. I scheduled barium swallow soon after and that ended up being less than a month away. The endoscopy and pH probe were scheduled in March during my spring break to make things easier during the actual tests, and I was told the biopsy results would come in 7 to 10 days. Since my probe ended up having 165 instances of reflux and was complex in general, it took well over a month for them to get back to me after the entire department had gotten together to interpret my results. From there, she told me on the phone that she still wanted me to schedule the manometry test but that I had to wait on her for some paperwork. She didn't get back to me until last week, and the manometry has been scheduled for the end of May.

After I have finished all of the pre-op tests, I may move on to a different doctor, but that means having another introductory appointment and it would take at least 4 months to get to a meaningful second appointment. Am I doing something wrong here? This is how all of my doctors have treated me. I need to find some sort of person that can guide me to exactly who I should see next, and who will follow me as I travel down the line, not just send me on my way without an answer.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

inpinkagony
Regular Member


Date Joined Mar 2013
Total Posts : 274
   Posted 5/7/2013 11:20 PM (GMT -6)   
It usually takes a couple weeeks, but gosh I am done with my doctor I really need to see someone who is an expert on my disease my tounge is looking worse it's like I am having geropgraic tounge or something, I decided I am going to Philadelphia to see an LPR specialist I would go to new york but it's too far so I might just go see the next best doctor I know of. I live in virginia so it's like 2hrs away, I just want to heal my throat and move on with my life. But I know with LPR you can not do anything but get surgery I know in the future i want to get surgery but I do not have the money and I still need to finish school, gosh why did this happen to us so young, sorry to be pouring out my frustration to you when you have it worse than me. But wow so many tests, how many classes are you taking? Good luck on all of them. You are not doing anything at all, do you have PPO or HMO insurance, I am just tired of seeing you in pain after reading your journey of nothing but endless and stupid doctors, I can relate to you on knowing more than the doctor already knows about our illnesses, I always get so angry when the doctor does not know his/her stuff. Why do you need another mamo? is it to determine how bad your les/ues have gotten? Gosh I really wish you can just find some kind of angel who can either cure you or send you to a surgeon already, what kind of surgery are you looking into? I want to do the linx in the future but I can't do that nor do I know if I will make it there
GERD/LPR 3 months. College Student. Aspiring Dietitian/Registered Nurse.

"Where there is no struggle, there is no strength."

inpinkagony
Regular Member


Date Joined Mar 2013
Total Posts : 274
   Posted 5/7/2013 11:22 PM (GMT -6)   
My biggest problem is trying to find a tooth paste that wont burn my tongue gosh I am just really not digging this new oral problems that occurring out of no where last thing I need is to worry about if I can drink or eat without doing further damage to my mouth! I hate how they make us wait for so long while things get worse but I know everyone needs to see the doctor LOL

opnwhl4
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Date Joined Dec 2008
Total Posts : 4961
   Posted 5/7/2013 11:32 PM (GMT -6)   
The PH probe is more of a wire in size and is much smaller than the manometry tube(if you have had that). My biggest issue was the pulling at my nostril when I swallowed or ate something dry. Remember to keep your throat wet.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

inpinkagony
Regular Member


Date Joined Mar 2013
Total Posts : 274
   Posted 5/7/2013 11:52 PM (GMT -6)   
ophnwl: Oh yeah I think they are going to do the mamo first than the probe I am still kind of nervous but I doubt I will be doing my test until the end of june or this month I am switching doctors and traveling out of the state to see an specialist on this LPR thing, no one in my area seems to be giving me clear answers, my tongue nd soft palate is starting to tingle, and feel weird and sometimes I can have dry mouth I do not know why this occurring so quickly making it difficult for me to talk and stuff.
GERD/LPR 3 months. College Student. Aspiring Dietitian/Registered Nurse.

"Where there is no struggle, there is no strength."

DontStealMyBacon
Regular Member


Date Joined Jan 2013
Total Posts : 186
   Posted 5/7/2013 11:56 PM (GMT -6)   
You're allowed to show your frustration, it's perfectly fine. I am pushing for surgery of a sort, but I do not know which one would be the most beneficial. Fundoplication is the most trusted once you can find a good surgeon, there are some others I havent looked much into, and the LINX is almost perfect. There is one rule on the LINX website that says you must be over 21 to get the procedure, obviously assuming that all of their patients are much older than 21. I am still 18 and the only way I will be able to get it is if doctors start being nice to me, but I dont exactly have the kind of connections I would need to make it work. I have never had a manometry and I know that it is standard to see the results of tests including this one before committing to surgery, so I know I need it.

My tongue is not that bad, but I am just noticing today just how thin all of my teeth are. They are literally so thin that I can feel the veins with my fingers, that would explain a lot of the pains.

I am only in my first year of college but I am already taking biology, chemistry, physics, calculus 2, and a chemisty lab. Next semester will be even more fun with organic chemistry, genetics, calculus 3, and my first biochemical engineering class. Above that, I'm also playing trombone in multiple bands, no matter how much my throat hurts when I play.

I also need to figure out some way to get exercise without getting a ton of acid in my mouth. What's a good exercise that involves virtually no upper body movement? I still haven't thought of one after all these years, and now Im back up to 240 pounds and still gaining.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 5/8/2013 4:35 AM (GMT -6)   
inpinkagony

Some meds can cause dry mouth. Not sure if you are taking any now, but just wanted to toss that out there as a possible cause.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

IDAD
New Member


Date Joined Jan 2013
Total Posts : 11
   Posted 5/8/2013 7:26 AM (GMT -6)   
Hi pink,

I had problems with dry mouth as well, mine started when my PPI dose was increased. My dentist had a few suggestions and I found them quite helpful; you could try mouth gels for oral dryness, you should get them in pharmacies. Rub them on your tongue and gums several times a day. Use a mouthwash without alcohol, there are even ones for dental sensitivity, they are less harsh then regular mouthwashs. Chew gum often throughout the day. Drink more water and always sip on water when you're out and about. And very important: Anxiety can cause dry mouth, try to relax and don't get too stressed.



With regard to the 24hr probe: I have mine at the end of next week. I am off the PPIs now, but I'm wondering whether I should stay on a low-fat/low-acid diet when I gest the test done or eat things like chocolate, fatty meats and drink OJ and so on to see how this actually affects me? Should I sleep elevated on a wedge pillow as I usually do or should I sleep flat? Any ideas?

DontStealMyBacon
Regular Member


Date Joined Jan 2013
Total Posts : 186
   Posted 5/8/2013 7:49 AM (GMT -6)   
IDAD,

For my pH probe I had a regular nights sleep on my elevated bed and tried to do different things in segments. For the first half of the day I tried to do as much of a regular routine as I could. After that, I tested a few small things like chocolate and even an orange, because those kill me. Just saying that I tried to show both and prove to myself exactly how it said I reacted to individual foods.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

IDAD
New Member


Date Joined Jan 2013
Total Posts : 11
   Posted 5/8/2013 8:15 AM (GMT -6)   
DontStealMyBacon,

thanks, sounds good, think I will try something along those lines, too! Cant wait to have chocolate again for the first time in six months, even if I have to pay for it afterwards ;-)

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 5/8/2013 9:53 AM (GMT -6)   
IDAD-

They recommend doing your normal daily routine so they can get a good picture of what is going on. To me that means going back to what you did before making all the changes to help with the reflux.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

inpinkagony
Regular Member


Date Joined Mar 2013
Total Posts : 274
   Posted 5/9/2013 3:52 PM (GMT -6)   
Hey everyone, finals week!

Umm I do not know if it's dry mouth exactly but I am going to see an expert for this issue and regarding my LPR because my ENT is not cutting it for me here he/she says doesn't cause LPR, this made me feel like wow I need someone more experienced, tired of running from doc to doc I hope get my answer next week.

Oh I tried over counter dry mouth things and they didn't help, I think I might get like prescription saliva or something, now my I am starting to get somewhat of geographic tongue on side of my tongue, it's scaring me what our illnesses causes us haha, my aloe vera I think cured my dry mouth thing. and I am not on any medication.

Bacon: I know what you mean, I am super excited about getting into my classes related to my major, when do you graduate??

Post Edited (inpinkagony) : 5/9/2013 9:13:44 PM (GMT-6)


DontStealMyBacon
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Date Joined Jan 2013
Total Posts : 186
   Posted 5/9/2013 8:22 PM (GMT -6)   
Hopefully I will be graduating in 2016, but my major has a very low 4 year graduation rate. Either way, I will be in school for quite a few years after that. I know exactly what it's like running from doctor to doctor, and I have yet to find a single one that cares about me as a person and not just a patient.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

inpinkagony
Regular Member


Date Joined Mar 2013
Total Posts : 274
   Posted 5/9/2013 10:13 PM (GMT -6)   
Hahahaa I know what you mean see I am suppose to graduate May 2014 (now May 2015), I can kiss that goodbye because I changed majors and I took semester off last semester due to my illness and depression when I was first diagnosed with this disease, you probably remember the first time you went through this, then I was transfer student, I wanted to go to school in Florida after doing 2 yrs of community/junior college, but like I got sick, so I thought it would be best to take semester off and just go to school close by which is what I am doing now, But I was originally a global affairs major/international relations (they both are the same thing) but I was like well I am sick now there is no way I can work as foreign service officer if I am constantly be on the move, I felt like I needed job that would keep me in one place and now I am into the medical field because I been surrounded with it lately having found an odd spark of interest by visiting all these doctors caused me to switch majors, I am currently majoring in nutritional studies deciding weather I shall do the 12-14 month nursing program to become registered nurse after and maybe along the line in future will be doctor, who knows one at time? But yeah it's just funny how I have to go out of state to do this, like I really hope this doctor is the doctor I been searching for because like you said I am tired of feeling like another number, I wana be treated with quality not as quantity, I am tired, and the more we wait the sicker we are becoming (another pet peeve about the health industry.) And I got c in psych which made me so angry cause I know if I wasn't being constantly preoccupied about my symptoms and illness I would have done better I can kiss my gpa (3.6 going down) goodbye, just hope I can make it through my summer classes, but we both have a long way to go! Doing any summer classes?

Post Edited (inpinkagony) : 5/9/2013 9:16:24 PM (GMT-6)


DontStealMyBacon
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Date Joined Jan 2013
Total Posts : 186
   Posted 5/9/2013 10:26 PM (GMT -6)   
Yeah I'm taking physics and genetics so that I can get ahead during my sophomore year, rather than risk getting behind later. So if something happens, Ill be on track and not behind. They're both in the same 6 week session, so they might actually get really hard, but in the fall is just as hard because I have 6 classes every semester.

Today I got the suggestion of seeing my dentist again and trying to see if he can push the idea that I need surgery, rather than talking to a wall like I've been doing with all the doctors I've seen.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.
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