This'll probably be the last post in this thread as it's over 100 now.
Kind of sad that after all these posts, I am no better off symptom wise than I was when I started part 1. But I am learning quite a bit.
I've been thinking about
what a disappointment my 2nd opinion ENT visit was. I'm sure I'd built this ENT up in my mind as someone who would take time to really think about
the connections between my symptoms, to at least come up with a theory or two. But that was not at all what happened. She gave me a smell test which I passed easily, looked in my ears and said they were fine.
I had a list of things I wanted to get her opinion on, such as, "I have done lots of research on BMS, yet I never see it mentioned along with globus/throat tightness, or throat sensitivity to spicy foods". (These symptoms more or less coincided for me). Her response "Yeah that is strange."
Really, honestly, I see the future of medicine being where a computer processes a ton of information: patient testimony, published research/case studies, lab/test results, attempts at treatment, and (to take advantage of all the other patient data within a medical system) the symptoms/test results/treatments of others. Now THAT would be advancing medicine. And patients wouldn't have to wait months for visits. Not to mention all the cost savings.
Now to my own treatment. Today I decided to try that allergy cocktail again, and I definitely have a slight decrease in tongue burning/throat/voice/tongue symptoms. Not huge, but more than anything I've taken before. When I tried only the Claritin/Pepcid part of the cocktail (leaving out aspirin), I didn't notice any help, so I'm thinking the painkiller may be the difference either on its own, or combined as an anti-inflammatory with the others. The last time I tried the cocktail, I had an uptick in stomach chills within a couple days, which is why I stopped. We'll see how long I can stay on it this time.
I've also noticed more anxiety lately, which seems to stem from being self conscious about
having an unhappy look on my face due to the constant tongue burning/sour taste. I've had good success with rational self talk, keeping in mind that I'm struggling with symptoms right now and I have the right to my feelings about
it, regardless of what others might think (not that anyone even notices or puts much importance in it).
I've found that lately, I've been "chasing" feelings.. trying to get BACK to where I was at some point in the past symptom wise. What a grand illusion that is. Besides being impossible, it's quite the opposite of accepting one's current situation in life. That non-acceptance probably breeds anxiety and stress all by itself. I have to keep reminding myself to live in the moment, and do my best in this moment, without feeling sorry for my current situation or constantly thinking about
what I might be doing to make symptoms worse (therefore what I might try to make them better). Sadly I think most of it is out of my control, so it is in my interest to remind myself of it and that I can still enjoy life despite my symptoms, while doing what I can to continue to help myself.
On that note.. my next 2 appointments are July 8th for a repeat endoscopy (my first since fundoplication). Since I haven't had significant reflux for ~7 months by that point, if they still find eosinophils in my esophagus, then there has to be something allergy-related going on. Eosinophils are sometimes caused by GERD, but also may be an allergic reaction. When I talk to my GI before the EGD, I'm going to ask him what he will do if there are still eosinophils there.
July 16th I see the neurologist. They gave my case to a brand new neurologist, a guy younger than me (I'm 35). I plan to go in there, as always, with specific ideas for my treatment including trying a higher dose of neurontin, and/or trying that pramipexole treatment if that doesn't work. I've emailed my PCP about
trying higher neurontin dose before I even see neurology, to rule out whether its going to work. She had previously prescribed me 100mg 3x/day, but from what I read that dose isn't going to do much.
Here's a brief summary of both of my threads so far:
- Something caused throat sensitivity, resulting in lots of swallowing. PPI helped 90%.
- Coincidentally, tongue was burning and sour taste was present (which is a phantom taste, not anything about
- Fundoplication, by reducing reflux, helped my throat though not as much as a PPI, but did nothing for my tongue/taste symptoms.
- In short: I probably never had a serious reflux problem, but some sensitivity that was not successfully treated. So the fundoplication is a bandaid just like a PPI was.
Take care everyone.
Post Edited (drtinsac) : 6/14/2013 10:34:02 PM (GMT-6)