Still without answers. Losing hope.

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.

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.

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.

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

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.

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

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)

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.

Hey Zelda,

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

Ash