Posted 12/7/2011 5:26 PM (GMT -7)
Hello to everyone. I have been reading on this site for a bit, and decided to post my story. Looking for any thoughts/advice/etc., as a year of misdiagnosis, unneeded surgery, and worsening symptoms has me beside myself.
I am a 34 year-old male who was first diagnosed with GERD in 2003. I have been on Nexium since then, and at 40mg twice a day for about the last 2 years up until a recent change in meds. Up until 2011, my only real, frequent symptoms were severe heartburn and very frequent belching/gas.
I should mention that I am a stubborn, foolish type who doesn't always listen to his body - eat too many trigger foods and drink too much alcohol, coffee, and carbonated beverages, even though I know these are to be avoided. As I will mention below, now may finally be the time.
I was scoped in 2003, 2006, and 2011. Most recent scopes from July 2011 showed some stomach irritation (biopsy normal) and a clean esophagus.
about once a year starting in 2007, I would get symptoms that my internist describes as "asthma-like" - a little difficulty with very heavy breaths, some throat tightness, etc. I tried inhalers to no avail, and the symptoms would just go away after a month or so.
In January 2011, I got a cold that was very bad and lasted 2 months. The coughing was ridiculous and continued well after the common cold symptoms other than that went away. My internist had me get a chest x-ray which showed slight bronchial scarring. She suggested asthma again, and put me on Advair. The cough died down, but in about March, I started experiencing new symptoms - a feeling of "wet mouth," like a constant need to spit; frequent throat clearing; occasional non-productive cough; a feeling like a thick paste on the roof of my mouth and my throat; and, most oddly, when I would exhale very suddenly or hard/deeply, the air would literally stop coming out my nostrils and try to force its way out of my mouth.
I eventually visited a sinus doctor in June, who said that he saw evidence of LPR, but recommended sinus surgery, which I had done. It was a painful recovery process but I was so hopeful my "post-nasal drip" symptoms would go away. They got worse.
Around July 2011, these symptoms became non-stop. Literally, there *all the time* - sleep, eating, exercise, always.
Both the sinus doc and my internist next suggested allergy shots, even though my allergy tests did not show any heavy allergies. Level II of V for cats was the worst (and I do have two), but I have always had that allergy and knew it never bothered me like this. Tried the shots. Didn't change a thing, and things again got worse.
Went to a new GI since mine transferred to another state. Scopes came out as mentioned above. He also tested for celiac disease, which was negative.
Continued misery since September has led me to a new ENT, who is not just a sinus specialist. He checked me with a scope after spraying a numbing agent in my nostrils and said there was a ton of mucus in my throat and that it was very red and irritated, all at the point where acid would be coming up, thus confirming the LPR. He switched me to Aciphex, gave me a laundry list of things to avoid (which I am now actually doing), and told me that if I just did that, I would be "back in his office in 30 days feeling like a new person." He did not order any scans or further tests.
I am hopeful that this will finally do the trick, but I feel *so* bad that I worry about all sorts of diseases, including throat cancer and esophageal cancer (even though my upper GI showed that was clean).
What should I do (aside from follow doctor's orders)? I have raised the issue of a 24-hour PH with my GI, but he wanted to wait til the allergies were ruled out (they are now). Are there further tests I should discuss? Do I just finally behave myself and wait this out?
Thank you to all of you for your time and your shared stories - these sites are great.