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Test results - meet with GI doc in two days - advice please

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Posted 8/19/2014 4:23 PM (GMT 0)
I have not seen the official report - however the nurse was kind enough to provide her "Nurse's Opinion" as well as a copy of output from a motility study.  I will post the results at the bottom.

I am a 36 year old male - was on Nexium at various dosages.  Was sent through a huge gambit of asthma evaluations to eventually determine I was not asthmatic.  GI put me on a large dose of Nexium and in 45-60 days the chronic cough along with all of the 'asthma' symptoms went away.  Eventually taken off of Nexium as it made my already dicey digestion from the stomach on down very bad.  So we thought - on Zantac and the loose/frequent stools are still daily - sometimes as often as 7 episodes in a day.

I am interested in discussing surgery with the doc.  I hate the drugs - but the reflux is awful.  On a typical day I have spells of hiccups several times for an hour or four.  They are violent and painful.  The pain in my chest becomes awful at times as a result.  They are worse, much worse, after running (I'm active duty Army, I have to run).

Other conditions:

depression

anxiety (GAD and OCD)

low-testosterone

evaluation by endo tomorrow for "fatigue"

severe insomnia - even when I do sleep... it doesn't seem to refresh/work.  I've already moved to a piece of furniture that I can comfortably sleep in a sitting position.

decreased concentration/mental capacity/motivation

libido (returning with test replacement)

ED (same)

extreme muscle aches/weakness

heat intolerance (yes, I know we're starting to hit a lot of classic hyper-thyroid symptoms)

appetite non-existent until afternoon.

I have already made most of the recommended lifestyle changes - except I have not eliminated coffee.  I have reduced it to a quarter of what it was though.

Items on study outside of reference ranges:

Basal Pressures

LES, resp min (mmHg) 0.1 (4.8-32.0).  you read that correct: point one!

LES, resp mean (mmHg) 5.8 (13-43)

UES, mean (mmHg) 20.7 (34-104)

UES

Relax time-to-nadir(ms) 65 (74-365)

Relax duration (ms) 176 (480-1020)

Recovery Time (ms) 111 (256-760)

Chicago Classification Findings:

EGJ: Normal Relaxation

Mean IRP (1.2 mmHg) is less than 15mmHg

Espoh body:  All swallows have failed peristalsis

Finding: Absent Peristalsis

The "Nurse's Opinion" - She explained in much more detail - all items observed showed a very weak system.  She was concerned that they would not consider surgery since my smooth muscles may be too weak to push food through a tightened LES.  She did say that this would be determined by the doc that writes the report and my GI though.

I have not seen the pH results.

I have already had an endoscopy.  Every item the GI observed was labeled followed by -itis!  He said from that alone I had a very severe case of GERD.  He did dilate a stricture as well.

Any thoughts or advice?

I really appreciate it!

Posted 8/19/2014 7:33 PM (GMT 0)
Hi afraid I have no advice for you as unfortunately I'm in exactly the same boat as you all of your symptoms mirror mine, particularly the "asthma type" symptoms I'm still plagued with. 37 female and still can't understand where this "illness" came from. It's debilitating and a nasty disease which I think a lot of "healthy" people underestimate

Probably doesn't mean a lot but I just wanted to say I know where you are coming from and how you must be feeling.

I really hope you have the outcome you want and the meeting goes well with the doc. Will you please keep us posted?
Posted 8/19/2014 8:30 PM (GMT 0)
You bet! I'll post on Friday what happened with the doc.

Curious if you have a sleu of other conditions like I do.
Posted 8/19/2014 8:59 PM (GMT 0)
Hi yes your original post stated virtually all the symptoms I'm experiencing. Apart from the heat intolerance. I've had my thyroid checked 3 times so I know it's definitely not that.

I've had the nissen performed 4 months ago and had literally 2 weeks where my symptoms slightly eased but after that they are all bank with vengeance. I'm guessing the swelling at the wrap site managed to keep reflux under control and as the swelling eased the symptoms are back.

I'm under the care of respiratory doc who has performed 2 spirometry but not meth challenge. He is in agreement with my gut feeling that my respiratory symptoms are due to reflux acid into airways.

I've had second manometry and ph test with no official results yet but she briefly hit on that I had 50% failed swallows and the pressure at les had only gone up to 7 from 4 before the op. I had no problems with swallows prior to surgery so in a matter of a few moths my motility has decreased quite significantly. The physiologist gave me the impression that I probably wouldn't be offered furthered testing or re-do, not sure if this was due to my test results or whether they just expect me to get on with it. Image to wait a few weeks to go through the results and that's if my go doc agrees to see me! He told me that there was no way his surgery would fail and my symptoms must be related to something ENT! I'm at my wits end like you the constant cough has eased (I'm still left with a cough but not to the same extent) and still have the horrific throat clearing and "wet" feeling in the airways.

I too have become quite depressed about all of this as I'm still stunned as to where it all came from! This is not me and this is not my life!! What Id give to have a normal appetite and a good nights sleep in a normal position instead of squeezed upright or balancing on a mound of pillows!

Sorry I've rambled and apologies for any bad spelling or grammar.

Wish you lots of luck
Posted 8/20/2014 12:58 PM (GMT 0)
Yikes. I'm pretty nervous about the next two day's appointments - endo today and then the GI today. I've been doing a lot of research - and from my understanding there are a lot of professionals that see a weak esophagus as a disqualifier for the nissen.

The doc that is leaving you the impression that you cannot do any more testing or procedures is a ___! Find a new one with a new opinion. What region are you in? If you do have an issue that involves several systems (which is what I suspect for myself) then you need a GREAT doctor that doesn't have too much pride to consult with OTHER experts as well. There are specialists because no doc can be an expert in everything!

I had to play middle-man with my GI and pulmonologist to figure out the GERD/asthma dialema. I plan on discussing GERD with my new endo today. I also plan on discussing anxiety/depression with him as well!

It frustrates me when the doctors treat the general/stereotyped condition not the patient. When my wife had to go back on chemo in Alaska (her oncologist from before was in Kansas) the new doc put her on a chemo dose three times what she was on before. Tons of side-effects. When we asked him why the high dose he said, no joke: "That's what I give all of my patients." The afternoon ater I made a few phone calls including patient advocate and a congressman - the old oncologist called my wife and said "I hear you are looking for a doctor!" They worked together over email and phone. You have to be your own advocate.

One year later - no evidence of disease... completely cured.
Posted 8/20/2014 2:19 PM (GMT 0)
Hi

I completely agree with you. I do think sometimes there is an element of ego involved with certain consultants and I have definitely found that my surgeon really doesn't take very well to the idea that for one reason or another my surgery hasn't been as successful as we had hoped. I too feel like I'm playing middle man between ENT, respiratory and GI. I rightly or wrongly "lost it" at my last apt with GI doc and told him I was sick of being fobbed off to different depts after he assured me that all of my symptoms were nothing to do with reflux. Nobody seems to want to stand up to him though and fight my corner for me though despite them being in agreement with me that its highly likely the reflux is the problem. It brings you down big time when you just seem to be going around in circles.

I suspect that my Gi doc will be telling me that there isn't anything else he can do as my first ph study results showed only a slightly abnormal demeester (which I believe isn't uncommon with LPR and respiratory manifestations of GERD) he only agreed to surgery because my LES was so weak. I wont be taking it lying down and will most certainly be seeking a second opinion.

Great news about your wife :-) just goes to show that we shouldn't really just accept what we are told and whilst I have a great deal of respect for health professionals and the knowledge they have, sometimes for your own good its best to question their decisions.

Excuse me for sounding dumb, but what is Endo? Do you mean you are having an endoscopy or is it an abbreviation for something else? Fingers crossed it all goes well and you get some answers.
Keep us posted
Posted 8/20/2014 8:16 PM (GMT 0)
Hey Trotters -

After a LONG discussion with the ENDOcrinologist - he said that he believes there is some sort of issue in my endocrine system. He put me in for a bunch of lab work. He specifically mentioned thyroid, pancreas and pituitary as concern.

I lost count of how many viles of blood they drew... I'm guessing 18. Plus a 24 hour urine test. It'll be a couple of weeks before they have results.

I'll post on here once results start coming in.

If you have been talking thyroid - that falls under an endocrinologist's specialty. How did they test your thyroid?
Posted 8/20/2014 8:49 PM (GMT 0)
Ahhh gotcha!

Think our health service works a little different in the uk and a lot of our blood tests are generally done initially by gps and then referred to specialists if anything out if the ordinary shows up.

I had bloods done to check my thyroid twice in a&e when I was admitted at the start of this nightmare with the horrific chest pains and air hunger and once by the gp who did a whole bunch of blood tests and they were all apparently normal.

Blimey 18 vials of blood! Wow bet that left you feeling a bit weak. Well at least they are being thorough. Hopefully you will start getting answers soon.

Thanks for keeping me posted and good luck with GI doc.
Posted 8/21/2014 10:53 PM (GMT 0)
Ninjasm,

Have you considered applying to endostim for an experimental procedure with your failed peristalsis.

It is also known that reflux can contribute to reduced Perisatalsis , so perhaps mention endostim to your GI.

Do let us know how you get on.
Posted 8/22/2014 11:09 AM (GMT 0)
I'm at a total loss. The gi said my motility weak but okay... and that my ph was negative for gerd. This is the same guy that after my endoscope said I was an inflamed mess, dilated a stricture at my les and said I have a very severe case of gerd.

He wants me to go back on 15 days of high dose twice a day nexium and call IF things do not improve. I've already been on this dose with him. It helped chronic cough only.

I need ideas. What are some other possible diagnosis routes to pursue? He also decided to hold off on coloscopy to see why I also gave chronic diarrhea. He thinks they are not connected.

No need to advise finding a new doc... I'm going to stop by the gi office at ku med while there for another unrelated appt and talk with them about taking me over.
Posted 8/22/2014 11:29 AM (GMT 0)
Ah, I feel your disappointment. So bloomin frustrating when you just need and want a solution. Think you are doing all you can at the mo and getting a second opinion. It just doesn't make sense if they tell you you are inflamed and have had a stricture??? I know that my first PH study was borderline abnormal and my surgeon only agreed to perform the nissen due to very weak (4) les and me having significant respiratory symptoms due to reflux. Think the results can sometimes be open to interpretation and what one doc thinks is reflux and a good candidate for surgery another doesn't agree. I was also told by the physiologist performing my ph and manometry test that she thinks my problem may be non-acid reflux doing the damage...this could be the same in your case? Really sorry you haven't had a successful appointment. I really hope someone finds answers for you.
Posted 8/22/2014 3:47 PM (GMT 0)
Thanks Trotters -

I've started a new thread about this issue at:

https://www.healingwell.com/community/default.aspx?f=45&m=3163552
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