Sore throat, burning tongue, for the past 4-5 months. It's driving me to depression. Is it LPR?

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PrivatePrime
New Member


Date Joined Oct 2014
Total Posts : 8
   Posted 10/13/2014 1:42 AM (GMT -6)   
Hi,

First of all I would like to say that when the doctors don't have the answers, communities like this where you can ask questions and share with others who understand what you're going through is so precious. Thank you for existing.

A bit about me:
- I'm in my early 30s
- I am super athletic and a fitness guru with a high protein diet and lots of fresh food and fruits (and supplements like multi/fishoil etc)
- For the past year I have had pretty severe anxiety that I've been seeing a counselor for occasionally and helping myself through life-style changes

My diagnosis story:

Some time in April, my significant other started to complain about a problem in her throat with something feeling stuck in there that wouldn't go away with swallowing. This was right after a dose of antibiotics prior to a HPV related minor surgery. She later checked in her throat and attributed it to what she called "Tonsil Stones" based on her internet research.

about 3 weeks after this incident, out of the blue I started to have the EXACT same symptoms. I thought to myself, this can't possibly be a coincidence. These must be related. I started having this feeling that something is stuck in my throat and all the saliva swallowing in the world wasn't getting rid of it. I also found that my tonsils were filled with white solid chunks and clearing these would give me temporary relief in my throat. It wasn't going away on its own so I decided to see my doctor.

To keep things neat from here on I'll make a list of the events and their time frame:

- After a couple of weeks of the "globus" feeling not going away I started gurgling salt water and a "burning tongue" sensation also started in on my tongue
- Prior to this, I never had heartburn or any symptoms that would even remotely making me thing I have reflux
- I saw my general doctor and based on my symptoms he immediately suspected reflux
- Per the dr.'s advice, I took 20mg OTC Omeprazole PPI for a couple of weeks, it gave me bloating, heartburn, strange thick saliva in my mouth and headaches, and made me MISERABLE, so I stopped it.
- My doctor suggest a Gastroenterologist and I saw one. He didn't really think much of my symptoms seriously but prescribed a barium swallow test to be sure
- Test showed i had reflux that came up pretty darn high
- At this point I had no clue what a horrible thing I had apparently been diagnosed with
- A few days later, the sore throat, tired jaw, tired and sore tongue symptoms from hell started
- The nasty symptoms would put me in a nasty mental state and made me very irritable and pessimistic
- I saw an ENT and he sent a camera through my nose to look around my throat and he said everything looks good and thought nothing about my tonsils. He seconded the LPR diagnosis and prescribed Omeprazole for 30 days and said to come see him if things didn't get better.
- Not having been convinced that any of these Dr.'s knew what they were talking about (I'm stubborn and with my healthy life style thought I couldn't POSSIBLY have reflux..and that this was something more serious)
- I saw a second Gastro specialist and he was irritated by the fact that I hadn't just sheepishly accepted the diagnosis of the other guys. He seemed smarter and more knowledgeable about LPR vs run of the mill GERD. He told me that LPR symptoms are much harder to treat so almost prepped me for the mindset that I would be ****ed for life.
- Second Gastro doc recommended endoscopy to rule out other issues but I said let's hold off on that so we can see what the PPI does to the symptoms.
- 4 weeks on 40mg Lansoprazole made ZERO difference in my symptoms. It did make me feel more bloated and created a strange thick saliva in my mouth with added joy of headaches.
- At this point I was ready to bash my head against the wall from the discomfort of the symptoms and went and saw my general doctor and told him I need help. He pretty much told me that it's likely LPR and I just need to try PPIs until one of them works. To put my mind at ease he did a blood test for H Pylori and it came negative.
- My doc gave me protonix 40mg 2x/day. This was very high dose to see if it would have any effect on my symptoms in the short term. After 2-3 weeks it made no difference so my doctor told me it's best that I go do an endoscopy.
- For the past 1-2 months I've been off all meds. I drink probiotic drinks all day, try to eat super healthy, smaller meals, no food before bed etc. The pain and discomfort is manageable, but my life quality has suffered _tremendously_. The discomfort comes in waves. In the mornings it's just a minor sore throat, when I eat all the suffering goes away. Then a few minutes after I eat I often start feeling crappy. A constant roller coaster of mildly annoying discomfort to very annoying.

If you've read all the crap above, thanks for getting this far. My question now is, after 5 months of the sore throat symptoms, life style changes etc I have finally decided to do the endoscopy in 2 weeks. I have been a super healthy guy all my life and I'm afraid of anything that involves being put under (I'm highly risk averse when it comes to health).

At this point, do you guys think it's justified for me to do an endoscopy? I'm almost in denial and so afraid that they'll find something worse than LPR symptoms... I so badly want the peace of mind that A. I don't have a terminal disease B. I have something that I can manage and live with because I KNOW FOR CERTAIN WHAT IT IS.

How does a healthy guy get LPR out of nowhere :( Was it the constant stress in the past year? Could it be something else? All the doctors I've seen keep making guesses with what to prescribe, their dosage, and the diagnosis. As a type A personality who likes crap to get done "right", it's so frustrating for me to watch them practice this way. But I know that medicine is still so primitive and they're trying.

But I want to take charge of my health and push these doctors to finally tell me what I can do to get better.

Anyway... Thanks for being here and letting me share this pain. The constant sore throat, is so hard to deal with. I miss life when everything felt normal.

Peace and hugs to my internet friends.

refluxmcgee
Regular Member


Date Joined Jul 2014
Total Posts : 20
   Posted 10/13/2014 7:00 AM (GMT -6)   
Hi PrivatePrime,

I know exactly what you're going through. Have similar symptoms - the sore/burning throat and tongue. The symptoms are like rollercoaster--one day they're liveable the next day, they're not. Even in the same day..I can have a good morning..and by afternoon it feels like all hell has broke loose. Going on day trips are the worse...you're always frightened..what kind of day is my throat going to let me have??

Everyone I know, has no clue what it feels like. They tell me to just 'ignore' the reflux. Or to hell with it, just 'eat what I want', as they scarf down burgers, pies, etc etc. I get so irritated and annoyed, because they have no clue what they're talking about!

I have been suffering from LPR symptoms for 8 months (a little longer than you). I'm also young, in my late 20s, and live a healthy lifestyle (exercise each day, careful about what I eat). And like you, I suspect my symptoms were brought on by a period of psychological stress. I am also a type A personality, high achiever, organized, ambitious... But until now, never really suffered from any illness in my life. This illness for sure has changed the way I think about health--and I realized now, how much I took my health for granted..I always felt I was invincible, and constantly worried about other people's health..not mine!

It's sad to say, but I have also been let down by the healthcare system, and medical field. I have been to different specialists (ENT and GI) and nobody knows what's causing my symptoms. They have simply dismissed me...with a 'I'm sorry, I know this isn't what you want to hear..but I'm stumped. I don't know why you're having symptoms'. It's so frustrating. Even after a gastroscopy, and every test you can think of..they still can't diagnose me...except to say..I saw a little 'redness' and 'inflammation'..'no doubt you're having reflux'...well no **** sherlock! (sorry, just a little frustrated here). When it comes to treating LPR/GERD...medicine is really primitive as you said.

I'd say something you can look forward to though..is around the 6th, 7th month..the soreness and burning went down slightly. I'd say from a 7-8/10 to a 6-7/10...on good days..it can be a 4-5/10. I know, I know, not much improvement. but hey, at least it's something to hold onto. Unfortunately, my dad also has GERD/LPR for 4 years. And he really has not improved much. He told me on his good days, he's a 5-6/10. Which I think is horrible.

I was like you...in denial that this was a chronic disease..and frantically looked for answers..for cures..for anything..because I said to myself..this isn't me..I'm young, I can bounce back..
Then I went through a frustration and grieving period..when my body wasn't responding the way I wanted it to..despite all my efforts..it was letting me down...and then I entered a depression phase...when I realized I was in this for long haul..permanently..forever..
Now I bounce between depression and acceptance of my new disease state...One day, I think..well I can accept this..this is just a part of me..a new me...other times I cry, break down, or just silently retreat. this is usually when a memory is triggered...a happy memory..like when I see pictures of me just a year ago, travelling with my boyfriend...visiting exciting new places, eating whatever I wanted..laughing, so carefree..being able to wake up smiling in the morning...wearing pjs and enjoying a warm cup of coffee, or milk tea, or some freshly squeezed orange juice..these are all things of the past.

What's worse is thinking about all the dreams of travel, trying new cuisines..starting a family...how much harder these dreams are going to be, to make them come true..:(
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