to everyone that replied to my "completely miserable post"

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lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 2/16/2014 5:44 PM (GMT -6)   
Hello to you all, im sorry im not able to reply to each of you individually. Im having a hard time focusing because of the sinus problems etc. I am very grateful for all of your tips and advice. As i mentioned, all of my symptoms came on during the Bravo probe placement and then have snowballed from there. So, i dont know if its vagus nerve damage or LPR. I have not had the manometry. I did have the Restech but it malfunctioned and i had the Peptest which showed high levels of pepsin.

My symptoms continue to multiply and spread. My very first two symptoms were the globus sensation and hoarse voice. (note; i was also put on ativan which helps some of the symptoms but causes many others which is confusing)

I now how these symptoms in order of misery starting from the top

1.) Globus and pain, especially when trying to talk. My voice gives out or becomes too painful within minutes. Feels very dry and scratchy and painful, clear into the chest. I also have to swallow constantly because my throat feels tight like a cricopharyngeal spasm and i have mucus in the throat that gets worse as the day wears on. All of the swallowing makes my stomach grumble and feel worse.

2.) recently i have had chest or esophageal pain which is worse when i try to talk, also accompanied by shortness of breath at times. Hard to tell if its airway related or not

3.) sinus hell; my nose has become over-reactive to everthing especially temperature changes. It resembles non-allergic rhinitis only with all of the symptoms of a sinus infection. Ive taken 3 rounds of antibiotics and it did not help. Two ENTs say its not an infection and have prescribed Flonase

4.)I had my gallbladder out in december. I had alot of stomach problems before and still have alot of burping and stomach upset but that could be the ativan or the flonase.

5.) The tests ive had are a barium swallow, two modified barium swallows, MRI's, cat scans, Restech, Peptest, gastic emptying study and lots of blood tests. All were basically normal except for the two tests that count the most. The Peptest and the Restech that malfunctioned.

6.) I have been put on every drug you can think of. None of it helped.

7.) I never experience typical heartburn.

The most depressing part for me is that i do not yet have a diagnosis and i have completely lost my voice 95% of the time so i am not very functional. I also get the sinus headaches every afternoon now. And i f i have reflux there is no way i can handle the nissen surgery. This leaves me in a constant state of depression feeling completely hopeless and angry that this has happened. I cant help but feel that something went terribly wrong during the Bravo probe (i did not have heartburn, the probe was done to fill a quota by a doctor with a horrible reputation) Thank you all for taking the time to read this. I pray for everyone here to be relieved of this misery everynight. Brett

p.s. attempting to go to a dentist tomorrow because i do have a bad tooth but i have no idea if its in any way related to my sinus and ear pain. I doubt i would be that lucky. I havent had any luck yet.

ldrunner
Regular Member


Date Joined Dec 2013
Total Posts : 103
   Posted 2/16/2014 5:53 PM (GMT -6)   
Hey mate, I'm really sorry to hear this.

sk55
Regular Member


Date Joined Jun 2011
Total Posts : 225
   Posted 2/17/2014 12:38 PM (GMT -6)   
Lob,

if your suffering this much, you should go see dr jamie koufman in NYC.

she smart and will figure what is going on.

musicchick581
Regular Member


Date Joined Jan 2014
Total Posts : 34
   Posted 2/17/2014 1:47 PM (GMT -6)   
Do you have food sensitivities by any chance? I was researching the histamine intolerance lately. Interesting find.

nofun
Regular Member


Date Joined Apr 2009
Total Posts : 51
   Posted 2/17/2014 1:58 PM (GMT -6)   
Hope you have good luck at the dentist. The ear and sinus pain could be related to the tooth especially if it is abscessed. See what you find out at the dentist and take it from there.

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 2/18/2014 12:44 PM (GMT -6)   
I do have some food intolerances but i know what they are and avoiding them has not helped. I also have a friend who went to see Dr Kaufman in New York and she put him on the same routine of drugs i have tried. It did not work. I cant take all of those meds. I just wish i could get the sinus problems and chest pain under control and get back to the usual misery of the the painful throat. I feel like im drowning. My dentist said he didnt think the tooth pain was responsible for the sinus and ear problems because he did an x-ray and filled the cavity. No improvement today. What a mess

liang7079
Regular Member


Date Joined Dec 2013
Total Posts : 34
   Posted 2/21/2014 11:24 AM (GMT -6)   
Sorry if this has been asked before, but have you tried Elavil? Some of Dr. Koufman's patients who did not find relief with PPI's had great improvements after taking 10-25mg before bed for a week.

musicchick581
Regular Member


Date Joined Jan 2014
Total Posts : 34
   Posted 2/21/2014 5:46 PM (GMT -6)   
I have one more suggestion. I want to recommend that you see a doctor for a blood test to determine if you have a mutation in MTHFR. I just found out that it causes all these problems and more. 1 in 2 people have a mutation on at least one copy. I just found out I have a mutation on 2 copies! There is an easy fix for this and I'm just waiting on going to see my doctor on Monday to talk to him about it. It's a very simple blood test, just find a doctor who is knowledgable and will test you for this.

Gondore
Regular Member


Date Joined Jan 2014
Total Posts : 119
   Posted 2/21/2014 9:20 PM (GMT -6)   
musicchick581 said...
I have one more suggestion. I want to recommend that you see a doctor for a blood test to determine if you have a mutation in MTHFR. I just found out that it causes all these problems and more. 1 in 2 people have a mutation on at least one copy. I just found out I have a mutation on 2 copies! There is an easy fix for this and I'm just waiting on going to see my doctor on Monday to talk to him about it. It's a very simple blood test, just find a doctor who is knowledgable and will test you for this.


It's interesting you should bring this up. I have researched MTHFR but haven't had any testing done yet for it yet. I was going to use https://www.23andme.com/ for my testing. Who did you use for your testing and what symptoms do you think the mutations may be causing?

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 2/22/2014 8:29 PM (GMT -6)   
What is MTHFR??

musicchick581
Regular Member


Date Joined Jan 2014
Total Posts : 34
   Posted 2/22/2014 8:59 PM (GMT -6)   
I used my doctor. He is a preventative medicine doctor so I guess he just checks for these things. If you look at 23andme.com, they are no longer doing health testing, only heritage background checks. Something about the FDA wants to investigate them further. There's a disclaimer on the site explaining why if you check it out.

Google MTHFR and you will find pages and pages of interesting info. There are two genes they usually test, 677 and 1298. You can be homozygous for one or more or heterozygous for one or more. 1 in 2 people have some mutation of the enzyme. It has to do with not turning folic acid into folate, which leads to an imbalance everywhere else in your body. (anxiety, depression, panic, excess congestion, gut/intestinal/gerd issues, miscarriages, thrombosis (blood clots), anemia, migraines, etc). I'm guessing my doc has little experience with it or he wouldn't have put me on a multivitamin with folate and not done much else to help me with it. Methyl-folate is the form that we can absorb. It's a bit complicated but if you google it, there are helpful easy to understand websites.

Here's a good site. It's the same stuff you will find on the research pages, but this woman put it in her blog.
http://www.freshideamama.com/mthfr-since-40-60-of-the-population-has-this-condition-and-it-is-the-underlying-cause-for-many-chronic-illnesses-shouldnt-we-all-be-getting-tested.html

Post Edited (musicchick581) : 2/22/2014 7:05:11 PM (GMT-7)

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