Manometry and ph impedance testing questions....

[missy]

Bless your heart! I am sorry you got so little sleep!

Thank you and TooPatient very much for the information. Missy, it is a very funny coincidence, but I had just ordered a book to try to help him go off those meds!

http://www.amazon.com/More-Heartburn-Days--Naturally-Effective-Gastrointestinal/dp/1575665107/ref=sr_1_1?s=books&ie=UTF8&qid=1399636612&sr=1-1&keywords=no+more+heartburn

That is a great book DiamondSeeker and I am so glad you got it! The article I linked you to reviews the suggestions of Dr Rogers in her book No More Heartburn as well and is a very helpful summary of a few good doctors so a compilation so to speak. The article it is lengthy but worth the read so it should be a great addition to the book. I hope it goes well for your dh. Those PPI's while certainly necessary for many people in the short term and I am sure necessary for some in the long term are way overused for many in the long term and I hope both your dh and I can stay off them if possible! And same for anyone else here.

Of course the doctors are not even sure what I have is heartburn and hence one of the reasons behind this test I am doing right now. I am on the verge of pulling the tube out. No way am I going to be able to workout with this in me. It hurts every time I move in any minimal way let alone working out. I told the doctor I would work out with this in so we can see if I have any reflux while doing cardio because I do get arm burning when I workout. But as much as I want to I just cannot do it with this in me.

Hope you find the info linked and the the book you ordered helpful.

 

[missy]

^^^^

Awe, shucks! happy to be there and encourage you thru!! Tic Toc... its almost done... you just might score a seat again on the NY subway system!! And seriously - if you do - GET A LOTTERY TICKET!! LOL!!!

Haha, thanks Enerchi. But no way am I going on the subway again with this tube in me. Once was quite enough. I will be pulling it out before my trip back that is sure. If I can get it out that is!

And I'll pick up that lottery ticket...when I know that my results are OK or that I will be OK diagnosis/treatment wise. Not going to jump the proverbial gun just yet. Superstition and all that jazz.

 

[Kelinas]

Thinking of you Missy ♥♥

 

[TooPatient]

You're almost there!!!

Hope you're able to get it out easily and get something to help your throat.

 

[missy]

Thank you Kelinas and TooPatient! You are both sweethearts!

I did my full workout with it in woohoo!
And I just called the doctor's office to speak with a tech and they put the doctor on. Pretty impressive cause that never happens LOL. He told me just pull it out (ouch!) and bring it in. Easy to say haha.

But first I decided I am going to drink a trigger drink one that I haven't had since my chest started squeezing and hurting. Plugged in still to see if anything happens internally. Thought a little experiment couldn't hurt at this late stage of the measuring. And I have missed my crystal ice black raspberry. It's so good, mmmm.

 

[junebug17]

Just seeing this - omg missy what an ordeal, you are a trouper! Glad you got the ok to remove it - you're in the home stretch, it's almost over!

 

[TooPatient]

Way to go!!!

I hope you enjoy your yummy drink and the doctor gets lots of useful information so you can feel all better soon!

 

[Smores84]

Happy for you now that it's done! Yay!!

 

[minousbijoux]

Pretty impressive that you made it through, and topped it off with a workout and a drink! Now how soon do you get results?

 

[missy]

Thank you so very much Junebug, smores, TooPatient and Minou! You guys are the best. Minou to address your question the doctor told me the data will be ready next week but drumroll please....................
he called me last night (Friday night) and already compiled the data for me. Here is a summary of the events yesterday afternoon:

My dh and I dropped the equipment off Friday afternoon around 1 PM and the doctor said he would call me next week however surprisingly he called me that night and had already compiled the data. So the good news is the tests were pretty much normal. More on that in a moment. The bad news is we still don't know why I am having the burning and chest squeezing. Sigh. I am so tired of this medical merry go round so I am going to take a break from doctors visits (except for my physical and gyn already scheduled for May 19th that is LOL) and give it all a rest. Unless my symptoms get worse or something else happens. I just need to take my mind off all these uncomfortable symptoms I have basically been dealing with in one way or another since January this year.

Results- now he was speaking fast so I really didn't understand all of it but I understand it was late Friday and he was very nice to even compile the data that same day when I wasn't expecting it till sometime next week so I am not upset he didn't go through it all as slowly as I might have preferred. I am calling his secretary Monday and will have her send me a copy of my results which I can share here as well if anyone is interested though I cannot imagine why because fortunately no one here has had to deal with this kind of testing and hopefully will never have to deal with it!

What I know:
To make a long story short (too late LOL) my results are basically normal. I have acid reflux about 3% of the time (which is normal) and those reflux events don't mesh with when I pushed the button to heartburn or chest pain symptoms. He said that's called functional heartburn.

The only reading that *might* have been abnormal was on the Manometry test done Thursday afternoon and I *think* it was the LES number and the reading was 17 and normal is up to 16 or something like that. I'm not sure what that means but he said he really thinks it is a normal variant since I don't get food stuck in my throat usually and that's what that number would signify (I only got food stuck on the 24 hour impedance Thursday and Friday LOL). I wish I had a bit more time to ask (any) questions when he called but it was a very quick call.

He did repeat that perhaps I should start the Lyrica the neurologist had prescribed for me last month. I had it filled at the neurologist's urging but do not intend on taking it especially because my burning symptoms while still occur everyday and frequent much of some days are less in intensity than when they first started out of the blue in mid February. And I would rather not be on meds that have other side effects if not absolutely necessary. Thank goodness the burning is less intense and when they get more intense at times I can power through for now.

The esophageal specialist also recommended I get a follow up endoscopy with my gastroenterologist next year which I will do. The endoscopy is baby stuff compared to that 24 hour ph impedance test so I would happily do 100 of those to 1 more impedance test!

Hope everyone is doing well and thanks again for all your support and encouragement and Happy Mother's Day to everyone and their moms!!!

 

[LLJsmom]

Wow missy you have gone through a lot. That test must have been awful. You tough girl. You got through it. Hope the current treatment works. Just wondering if you have tried holistic remedies since you're not loving all the drugs they've had you on.

 

[missy]

Wow missy you have gone through a lot. That test must have been awful. You tough girl. You got through it. Hope the current treatment works. Just wondering if you have tried holistic remedies since you're not loving all the drugs they've had you on.

Thanks LLJsmom. I have been through a lot and I always knew I was strong but these last few months have proven it lol. Though I have moments when I break down that release is necessary to help me get through this and I always feel a bit better after a good cry.

I have been living as holistically as possible and did a lot of reading/research to that end and I currently am taking digestive enzymes with every meal and probiotics before my main meal every day. As well as DGL a few times a day and before bed and drinking aloe vera throughout as needed. Plus just remaining as grounded and centered as possible and trying to block out all the "noise" if you kwim.

The pain and discomfort is an almost constant "noise" that makes enjoyment of activities challenging as well as living in the moment a challenge. Think of it as traffic noise on the street. You may not always be aware of it but studies show that it increases the level of stress while you are around it. And I am trying to break free of that noise of the pain and discomfort and trying to focus on each task at hand. Whether it be enjoying the day with my dh, going shopping, reading a book, being on PS, watching a movie or eating a meal as examples. The last few months have flown by because time almost loses all meaning and passes as a pain induced blur when you are dealing with a constant noise in the background that noise being the discomfort and pain I am having.

So I am trying to get back to my normal daily activities and block out the noise and not allowing time to pass in the blur induced haze I have been experiencing. That is I am focusing on each task at hand so I can enjoy each moment vs losing all sense of time. Sorry for the long winded explanation and thank you for your kind words and thoughts.

 

[minousbijoux]

So impressed with how you represent yourself and who you are. You are humble and kind, grounded and searching, compassionate and loving, and funny and fun. I'm sure I would love to know you in real life. You are a trooper. This sucks, you don't deserve it and I have faith that you will get through it.

As you probably know (its not been a secret), I'm a breast cancer survivor - I don't even think about it much any more (I was very young) so that's a good thing. But there are repercussions. I have been in and out of menopause several times based on requirements of the aromatase inhibitor medications I needed to take. As a result of these meds, and chemo shots, they gave me an antidepressant for help out mood wise, as well as to mitigate hot flashes (wicked, wicked hot flashes!). The antidepressant in turn, along with weight gain, has caused ongoing reflux. I am fine if I don't eat much, no alcohol, coffee or hot drinks, no spices, no acidic foods especially fruit, and no fatty foods. Oh, and nothing starting hours before bed. And even then, for no apparent reason, it happens. I'm sharing all this not as a comparison to what you are going through - I actually can't begin to imagine all that you've been through - but to say that you are wise to question adding yet another medication. I am alive, feel relatively healthy, and have no regrets, but I too, am trying to minimize medications because they often have unintended side effects and can often mess with the body's carefully crafted balance. I would rather try the exercise, simple eating, and meditation route in the hope that maybe just maybe things will improve...

Best of luck and big hugs to you!

 

[missy]

Minou, that is so lovely and too kind of you to say and I feel the same about you. I can tell you are someone I would love to get to know in real life as well.

I am so sorry you went through so much and at such a young age. My heart goes out to you for all you have endured and continue to deal with to this day. And I am so glad you made it through and are doing so well. Surviving a life and death ordeal as you have done allows you a unique perspective and appreciation on life. How exhilarating and amazing and sweet being alive can be and at the same time how challenging and difficult and fragile it can be.

I wasn't aware of your medical history except maybe superficially (though my mind isn't as sharp these days as I would like it to be) and thank you for sharing that with me. Thank for for taking the time and compassion to share and post here for me and thank you for your well wishes and hugs.

I am sending big hugs and healthy vibes your way too and I hope perhaps one day I can give you those big hugs in person. Be careful because while I may look delicate these days I still give a big strong hug. You have been warned. :big smile:

And happy Mother's Day to you minou. Your children are lucky to have you!

 

[minousbijoux]

You are such a keeper, Missy! And strong Mother's Day hugs right back at ya!

 

[junebug17]

So glad these tests are over missy! But I wish these docs could figure out what's going on so you can get some relief - I am hoping so strongly that these symptoms lessen as time goes on - and am so sorry you are still in such pain and discomfort. It's just so crazy - keeping you in my thoughts, you are handling this really well and I admire you for it. (((((hugs))))))

 

[missy]

Thank you again minou and Junebug. You guys are so supportive and it means a lot to me.
Update:
I saw my dermatologist this past Tuesday and he ran more blood tests this time on a whim to rule out hepatitis and Epstein Barr. Well his nurse just called me. My Epstein Barr test is positive but they don't know if it is still active. In other words it doesn't mean this is what is causing my symptoms. He wants me to see my internist. I already have an appointment with my internist this Monday for an annual physical so I will see if my internist can shed any light on this result. Not sure if this is going to help me in figuring out this puzzle or just another layer of complexity but this is the first test that came back with anything so I am hoping it leads to answers. Thanks for hanging in there with me. Hugs to everyone.

 

[diamondseeker2006]

Thinking of you, Missy, and hoping you can get to the bottom of this really soon!

Gosh, what I just read said 95% of adults will be infected with Epstein Barr by age 40!

 

[TooPatient]

I hope this gives them a little information to work with so they can figure it out soon.

Have they considered some sort of allergic reaction? Either to food or some household product or clothing material?

Keeping you in my thoughts and sending lots of hugs.

 

[missy]

Thinking of you, Missy, and hoping you can get to the bottom of this really soon!

Gosh, what I just read said 95% of adults will be infected with Epstein Barr by age 40!

Thanks diamondseeker. I know I read the same thing and that's why I am so surprised my derm wants me to see my internist about this. He's a pretty smart guy and that's why I am still having him help me regarding this even though he's a dermatologist. He's been more helpful than any of my other doctors in terms of thinking outside the box these last few months and he's trying to help find what's wrong. The fact that he contacted me right away about this latest finding and wants me to see my internist makes me think it could be something to follow through on but I am trying not to get my hopes up. When I read that so many are infected with EBV I started getting less hopeful.

I'll see what my internist says on Monday. If he is no help I might start thinking about an infectious disease doctor because I am just so sick of being sick yanno? This darn burning is truly almost constant. I had no break from it today at all and the chest squeezing is very unpleasant on its own.

Thanks for the good thoughts, I appreciate them!

I hope this gives them a little information to work with so they can figure it out soon.

Have they considered some sort of allergic reaction? Either to food or some household product or clothing material?

Keeping you in my thoughts and sending lots of hugs.

Thank you TooPatient. Seems unlikely but my dh has wanted me to go for allergy testing anyway because I have so many allergies as it is and I was never tested for food allergies. I have been putting it off because I am tired of spending all my time going to doctors with no success and I also didn't want an even more limited diet than what I am currently eating but I guess I need to just suck it up and make an appointment. I understand food allergy testing is not very accurate though so just another factor I was considering. Thanks for your input and for the hugs!

 

[Dancing Fire]

Missy, hang in there! and stay positive...

 

[missy]

I am Dancing Fire and thanks for the support.