Still without answers. Losing hope.

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zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 7/26/2012 3:25 PM (GMT -6)   
Hello everyone.

I am in a tight spot.

I got a new GI, who decided I could have another PH test since the last one failed, and that I could get the airway test to check for LPR. Let me just say, I have LPR. Diagnosis has not been forthcoming, but I am certain LPR is what I have, there is no question. I have all the symptoms, every single one, and some more besides, such as, a feeling like vomit hanging about in my throat, but with no liquid, which causes wheezing and cough. Also severe ear pain, blood weals in the mouth and throat, coated tongue, sour terrible taste.

My larynx is shot. I have no strength to talk properly and am just in a state of misery.

But I digress.

So I got the PH probe and manometry again, including the airway probe. Guess what? I was NOT symptomatic AGAIN. I got a little reflux but nothing in the throat and airway. The acid levels were in normal range (12) and none read in the airway.

So by now, here is what I have had done:

Upper GI, 3 times. Once under sedation, twice without.
Nasal endoscopy into the throat, 2 times.
Manometry and 24 hour PH probe, twice, once with the airway probe.
Barium xray.
Multiple blood tests.

The results have been a small hiatus hernia, a weak LES, then with the latest test, a normal LES. No positive acid readings. Nothing. Small amount of inflammation in the stomach. Allergy tests showed nothing. The throat endoscopy showed 'changes in the larynx that can be attributed to reflux' (sic).

Here is what I have tried:

Lansoprazol both once and twice daily. No help with one, two gave me extreme dizziness, and no help with throat.
Omeprazole. No help.
Rabeprazole. No help.

I need to add that when I say no help, I am referring to the throat symptoms. I can easily manage acid reflux, I don't get that much anyway.
Raising the bed head 6 inches. No help.
The Kaufman diet. This may sound weird but the ear pain became incredible while I was on the induction diet. I stayed on this for 3 months. In the end I got frustrated and ditched the diet, and ate what I liked. The ear pain disappeared! VERY ODD!!

All the while I am taking Gaviscon Advance, which helps when I get acid but does nothing for the throat problems.

I have gargled and drunk bicarbonate of soda. No help.
I have tried DGL, and slippery elm, and aloe vera juice. No help.

I have made all the lifestyle changes. I never drink alcohol, caffeine, soda, citrus. I hardly ever eat fat, and never eat spices or tomatoes or tomato based food. I never eat canned food and eat organic.

I am looking into a pepsin test. It seems there is a company near me that does them.

I am not trying to be awkward, but I know I am a 'bad patient', because nothing helps me and I am a source of frustration for the doctors. But it is more frustrating for me, I am desperate. For those who don't remember me, this has been ongoing now for around 5 years.

I really want to get the Nissen, but no surgeon will entertain me because there is no data to confirm reflux, so they are not even willing to give me an interview.

Can any of you lovely people suggest anything for me? I apologize for the lengthy post.

Forgive the negative nature of the post. I am no longer the person I was. I am a disease now, it has consumed me entirely.

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 7/26/2012 4:23 PM (GMT -6)   
No matter how frustrated you are please don't think of yourself as a "disease".  The pepsin test sounds worth a try and I am wondering what your Dr. order for the stomach inflammation ?
 
I wish I had the magic answer but perhaps another member will be along that will have good advise for you.  I will keep sending good vibes your way and hope you can get to the bottom of your problems and find help with the throat problems.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"I am not afraid of storms for I am learning how to sail my ship" ~ Louisa May Alcott

zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 7/26/2012 4:30 PM (GMT -6)   
Hi Kitt,

Thanks for the response. Just to respond to your question, when the results came back to my consultant, he said that nothing had been recorded about inflammation. This was 2 years ago now. It was the nurse attending at the GI scope who said the doc had found inflammation. He obviously didn't think it was serious enough to record, and a subsequent GI scope showed no inflammation present.

The worst thing is I feel so alone. With no real data coming up, I feel the docs think I am either making stuff up, or, as the clinician who did my motility said, I am 'hypersensitive'. I can't believe hypersensitivity could cause the throat issues I am having, but in short, I feel like they think I am pathetic.

ericapeace2000
Forum Moderator


Date Joined Mar 2012
Total Posts : 1110
   Posted 7/26/2012 4:51 PM (GMT -6)   
I am so sorry you are going through this. I have not been through nearly as much as you have and I don't have LPR but just GERD. But recently I had a chest x ray, blood work to check for celiac, mineral deficiencies, (and something else I forget the name of it) had an ultra sound of my abdomen, a gastric emptying study, and an endoscpy. All that was found was mild reflux esophagitis. Meanwhile I am experiencing very intense chest pain felt through my back, upper stomach pain, and mild heartburn that comes and goes. I follow a gluten free, low fat, low acid, no dairy, low carb diet. I take Nexium once a day, I chew gum constantly, take tons of supplients, drink a lot of water, sleep on a bed wedge, don't eat past 7 pm and I still have symptoms! I know how frustrating it is when you are doing everything you are supposed to do and you still have problems.
Diagnosed GERD, no other medical conditions (this one is enough)

zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 7/26/2012 5:14 PM (GMT -6)   
Thank you for the thoughts ericapeace. I would just like a solid diagnosis, that would be a start. At the mo I just think the docs think it's all in my head.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 7/26/2012 8:24 PM (GMT -6)   
Hi Zeldagoblin,
Sorry to hear you're having such a struggle.  Actually, your situation sounds eerily like mine.  It took over 6 years for a GI doc to even give me the option of going to a surgeon, and that was after countless contacts from my PCP and allergy doc.  My PCP finally referred me himself, to a surgeon with whom he had a close relationship.  That surgeon put me through tests (endoscopy and barium swallow) and told me I would be a good candidate for surgery--and I'm sure it was largely because he respected my PCP's opinion.
 
My 24hr PH monitor DeMeester score was 4, and yet my lungs were in horrible shape, and my asthma uncontrollable.  My GI doc said that my lung problems were definitely not related to my reflux.  My PCP disagreed, and found it extremely frustrating.
 
After my PCP referred me to his own surgeon, I went back to my GI doc, armed with the information from the tests and the surgeon's comments.  At that point my GI doc gave me another PH monitor and my score was borderline high...a DeMeester score of 14+.  Finally, with a bit higher score, but mostly because of my PCP's perseverance, the GI doc said, I could either continue with medication, or he could refer me to the surgeon he recommends.  Of course I opted for the surgeon.  My lungs were a wreck and I'd been on top dose PPI and Ranitidine at bedtime.  It wasn't doing any good!
 
The surgeon was a bit concerned about my low DeMeester score but was willing to do the surgery on the recommendation of my other doctors.  Post surgery, my lungs took two and a half months to clear up, and since then they've been great.
 
I understand what you're going through.  Don't give up.  There is somebody out there who will listen and believe.  It is a struggle, I know, but somehow, somewhere, you'll find the right doc, and you'll get the testing when you're symptomatic.  Just hang in there!
 
Wish I could do something to help!
Take care,
Denise
Words of wisdom by Eckhart Tolle:
"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 7/27/2012 4:14 PM (GMT -6)   
Zelda,
Just some random thoughts ( apologies if I'm not helping):

* does antihistamine do anything for you?
* does metaclopramide do anything to help?
* could you try Carafate to coat your throat and oesophagus?
* for hypersensitivity I think there has been studies showing antidepressants can help - if a main symptom is pain it's also possible something like amitryptyline might help
* the being worse on the Koufman diet makes me wonder about allergy - on exclusion diets/low allergen diet if some but not all trigger foods have been removed it can cause a flare up. In allergy, withdrawal symptoms can also cause a flare up. May be worth trying a low allergen diet, especially if you have other allergy symptoms like hay fever or eczema.
* what are the "blood weals" and has a doctor diagnosed them?

Hope you get some more helpful responses from the medics soon.

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma

cayenne
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/27/2012 5:32 PM (GMT -6)   
Many of the symptoms of LPR are also symptoms of severe sleep apnea.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/27/2012 5:41 PM (GMT -6)   
Zelda, I wonder if you have a problem with your epitglotis (sp?).
My reflux damaged mine and at times it feels like stuff stuck in my throat.
See if your doctor will do a focused barium swallow on just your throat.
Joy

zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 8/10/2012 1:19 AM (GMT -6)   
Hi, and thanks very much for your helpful and kind responses. I have honestly learnt more from forums like this than from the medical experts.

Thanks Denise, I find your story both comforting and worrying. I am in the UK, which I think is holding things back for me, we are only just starting to understand LPR here, and many don't even acknowledge it exists.

MMM, I take antihistamines regularly for my allergies, they don't do anything for the ENT symptoms, just stop my eyes itching and sneezing. They do help me sleep though. I have never been offered metaclopramide, I assume it has a similar role to motilium, which I did try and it didn't help the symptoms. As for Carafate, it is very difficult to get a doctor to prescribe that here, it is only really used for ulcers. I mean to ask my GI about it though. I am currently eating the most basic diet ever, boiled rice, boiled chicken, plain pasta, boiled broccoli, oatmeal, and wholemeal bread. When I list those, I mean that is ALL I am eating. No seasoning, no butter or spreads, no sauces, nothing. I am drinking water, sometimes boiled with a little milk. Honestly, I have done this now for 3 days and noticed a very slight reduction in the ear pain...I plan to add more foods slowly to see what I can tolerate. The bloodweals have not been evident when I see the doc, I don't know what they are, and she gives me the blank stare when I mention them.

Joy, I am sure I need another ENT referral, but my doctor is refusing to send me there while I am still under the GI. She says she will do it only if HE says so, so I will have to wait til October...

So I am still having a dreadful time, but I am hoping that my new ultra plain and simple diet might change things.

33333
Regular Member


Date Joined Jun 2012
Total Posts : 94
   Posted 8/10/2012 2:55 AM (GMT -6)   
zeldagoblin,

Based on my symptoms, I think what I have is LPR. It seemed like my ENT was not a LPR believer and said it was all caused by my brain being hypersensitive. He prescribed me PMS-Gabapentin, but it didn't work.

If "hypersensitive" does apply to you, the article below might be helpful.

http://www.caslpa.ca/english/resources/database/files/2010_CJSLPA_Vol_34/No_04_226-303/Morrison_Rammage_CJSLPA_2010.pdf

FLY135
New Member


Date Joined Aug 2012
Total Posts : 10
   Posted 8/10/2012 11:32 AM (GMT -6)   
Get checked for Gluten intolerance (Celiac). My daughter went to 3 different gastroenterologist's and none checked for it. Finally one day years later a regular doctor sent in for the test and it was positive. She suffered many years before the diagnosis.

zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 8/10/2012 4:58 PM (GMT -6)   
Hi, thanks for the posts guys. FLY135, I was checked for gluten intolerance in my last gastroscope, 5 biopsies were taken and no intolerances were detected. Thanks for the suggestions.

Edited to add: thanks for that link 33333 that's so interesting. Saved for future ref. Really appreciate you people <3

Post Edited (zeldagoblin) : 8/10/2012 5:03:05 PM (GMT-6)


hebfour
New Member


Date Joined Aug 2012
Total Posts : 2
   Posted 8/13/2012 6:07 AM (GMT -6)   
Hi~
I've suffered-after having been a strong healthy person-with numerous medical challenges over the last years-& GERD has been one. I too wandered thru a forest of Dr.'s & tests with no reprieve. Finally, I began to diary my foods (after going to a good naturopath) & thru trial & error started to see what seemed to throw my system off. May I also share, that I know it gets so absolutely discouraging & wearisome. Our bodies are so unique & complex and Drs only know so much. I've also worked with the elderly who are challenged with so many of these ailments-also seeing the 'run arounds' that occur...not necessarily intentional-yet seemingly a part of human limitations.
That said~in my case I bought natural baking soda(no metals) & use a half teaspoon in water-- & like you began to change my diet. Every time I ease back into cheeses-or dairy, some nuts, soda pops, candy & sugar, greasy or fast food, heavier carbs(some of the regular no-nos) ...trouble starts. Drinking liquids w/meals (which I like to do) can also be a problem. I also get natural yogurts & eat a few tbsp's (low fat/fat free) for times when my system freaks out. I also use a heating pad on my stomach when I'm really whacked with symptoms (of course sleeping upright with the softest blankets & best pillows I can find for comfort).
This info may not be new for you...but I do know the horrible frustration & literal pain from it all.
May God bless you on your search-I had a friend say to me "Pain...the gift no one wants". I learn
volumes thru these struggles with now numerous med challenges & hopefully one thing- is I have more compassion. Still-no fun at all. smhair

hebfour
New Member


Date Joined Aug 2012
Total Posts : 2
   Posted 8/13/2012 6:51 AM (GMT -6)   
One more thing, even though I wasn't going to go heavy into it in the previous post~I saw that 33333 mentioned "brain sensitivity". I began to have many 'Body reactions-weird medical issues' after I had a brain injury in 2001 following a 'blow to the R side of my face'. I was given an electrical treatment (large tens unit-on high-leaving me on past the timer bell-placed along my R shoulder/neck area). From the day I got off that tens unit table, I was worse- vomiting profusely, dizzy, sick to my stomach, had ungodly headaches/sweats-just a multitude of symptoms---which never would go away with NO proper diagnosis---this for the first few years. Over time, I realized from my own research-that I had been electrocuted following a brain injury & all of my senses had seemingly lost some sort of protective "shield". I'd been a Music/Arts director & could not take teaching kids or sound/smells/ or pressure anymore. Everything was hypersensitive in my system after that-as well as having my front teeth partly knocked out(I'm a professional singer). It's only by the grace of God & a great husband that I did not literally lose my mind from it all along with the severe pain. As I post this I am poised to have my bone grafts & teeth implants go in just this week-a long haul. Gerd followed this, head troubles, inability to sleep and seemingly no Med. help or proper diagnosis. Now-over 10 yrs later, trial & error, naturopathy, cranial therapy, Chinese reflexology (which I love & do a few times a months w/massage!) & careful mgmt of symptoms-I have a decent amount under control. I can also attest to the allergy piece (never had allergies before the TBI/electrocution). I have now switched jobs-work in senior & hospice care with music therapy (it is a quieter) since the injury, having once been a vibrant music director/art teacher. I'd had little or no medical problems in my life before this injury. My thyroid also blew up (enlarged) and I was partly paralyzed on my R side (with buzzing constantly on that side). From much research I feel my pituitary & hypothalamus was somehow involved in this as well-& I'm still studying cases on the web. Today, I am playing Jazz/pop & Gospel music gigs, can move my fingers again & manage my symptoms. I work with disabled folks and encourage them-even though I know that sometimes we are never what we once were. I know the story sounds bizarre-but it is-was-all real. I'm not the same person I was-I am a new person with more faith & compassion, unlike anything I had before. It's all still a challenge-but it's all OK. Blessings to you as you continue your search for healing & never give up having faith & hope.

flux
Regular Member


Date Joined May 2007
Total Posts : 28
   Posted 8/13/2012 4:02 PM (GMT -6)   
Are you not able to see any doctor you wish? Here are some expert reflux doctors in your country.

www.manchesterrefluxconference.co.uk/speakers/

www.pluralpublishing.com/author_John_Rubin.htm

master list
www.voicedoctor.net/physicians?f[0]=search_api_aggregation_1%3AGB%20United%20Kingdom

Post Edited (flux) : 8/13/2012 4:30:00 PM (GMT-6)


aeshleyrose
Veteran Member


Date Joined Jul 2011
Total Posts : 656
   Posted 8/14/2012 11:49 AM (GMT -6)   
Hey Zelda,

Just a thought. Were you off PPI's for the tests that you took?

Ash
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