Seeking Advice and Guidance

[Redpanda8]

Over the last 16 months I have had countless tests and investigations as well as numerous consultations with professionals about my situations but still feel non the wiser. Really hoping someone could guide me onto the right path as really not sure what to do next. In a nutshell, this is what i've had done:

Two endoscopies to check esophagus, stomach and duodenum-all came back clear with no sign of reflux

Full Body scan- only picked up enlarged heart, which has been checked again by a cardiologist and all ok

Barium Swallow which picked up mild -moderate espophageal dysmobility but no reflux

PH Bravo test - results came back showing NO sign of reflux what so ever (which is strange in itself)

Two camera tests performed by ENT Specialist -which where all clear

My symptons are as followed:

sore throat and irritation - everyday (which is my main concern)

mucus in back of throat - occassionally

pain in chest and, shoulders and back - daily

runny nose - occasionally

Sinus headaches - for the last 5 days (new symptom)

Pain on left side under ribs

Food sticks at the top of the esophagus

pain on leftside neck and warm feeling in left ear

Since middle last year i've been advised to take nortriptyline for the dysmobility and esomeprezole daily for reflux. But this is where I'm confused. My Gastro consultant was absolutley adamant that I wasn't suffering from Acid reflux at all and his only concern was the dysmobility. But when talking to my GP at my local surgery he is keen to keep me on the esomeprezole because he feels that having the dysmobility will make me prone to having reflux. I'm really not sure who to believe.

I just wondered what everyone else thinks. Does it sound like I am still having episodes of reflux, which then suggests the esomeprezole isn't working or can having the esophageal dysmobility mimic the same symptoms as having reflux?

Would really appreciate anyone who has dysphagia as their primary problem to share their story and advise what to do next

Thank you and best wishes to everyone on this site

[strangetimes]

Sounds miserable !

When the guy who did my endoscopy told me the results showed that I had cancer I made some remark about how it must be a tough bit of his job to have to tell people that .

His reply was that what he found tough was having no answer for people who suffered with symptoms for which they couldn't find a cause .

Anyway ...I've recently learned of the existence of pepsin from another poster on here - gutlesswonder and I wonder if it could be that causing your trouble ?

Tho I think that pepsin causes damage only if it's the presence of acid ,so I guess if your tests show no acid reflux then that would mean no activated pepsin .

But anyway ,point is that PPI's won't help much if pepsin is causing the trouble but Gaviscon plus/advance ( the one with an alginate ) should help ,so maybe worth a try .

But I feel we need gutless to comment .

[Redpanda8 in reply to strangetimes]

Hi Violetqueen

Thank you very much for replying. I also read the papers about Pepsin and found it very interesting. It is something I have considered for a while now to whether it's more a Pepsin problem. Last summer I asked my GP, ENT guy and Gastro consultant for a pep test to be carried out but was told none of them were able to do it for me and it wasn't something that was available presumably through the NHS or even privately. Instead I found a company on line and did it through them instead.results came back clear. Very tempted to do it again though. It's all very frustrating. While I had had all the main tests done I had put my self on a very restricted diet and lost a lot of weight. Just wondering now if that would have affected the results at that time? Anyway I'll stop rambling. Funnily enough I bought gaviscon advance just this morning and I'm going to experiment and see if there will be any improvements. Just feel I've exhausted the medical help and not sure what to do next.

Thanks again. I really hope your treatment is going well and you're fighting this evil disease.

Best wishes to you

[Hidden]

It would be possible to be suffering from some reflux, but also to have some problem at the top of your oesophagus that prevents food from passing through properly. It sounds like it is no a physical obstruction like a stricture, because presumably the endoscopy would have picked it up.

So it might be some trouble with the muscles in the oesophagus towards your throat. It might be useful to have a high resolution manometry test to indicate the pressure indicated at various points down your oesophagus. This might be something to do with the vagus nerve system, and that might be triggering sensations and pain in other places you describe. I think it is possible that reflux might trigger this off but it might be unlikely. Taking the acid suppression medication is therefore staying on the safe side in case this is a factor.

There are acid/alkali measuring sticks that you can obtain from the internet or from a pharmacist, but you have to be careful with these as acid levels change. And it is very possible that the dysphagia is not being caused by the reflux anyway.

But something is causing the soreness and irritation. If it is not reflux, then it might be some form of allergy. Or it might be another element of reflux that PPI medication does not touch. So taking Gaviscon Advance is logical and might help.

This is all non qualified speculation of course

[Redpanda8 in reply to Hidden]

Hello Alan

Thank you kindly for your reply. I did forgot to mention in my original post that I also suffer from frothy spit, bleeding gums and I burp after eating or drinking, and I tend to suffer from a lot of wind too, which isn't pleasant!

It is very interesting that you mentioned about a muscle problem in my throat because this is something I have suspected for a while. I'm currently seeing a neurologist about a pain that I've been having in the side of my right neck, which started in 2014. I've also had problems with pins and needles and weakness in my right arm and hand. As well as this I've been struggling with low Iron levels, which has subsequently caused excessive hair shedding. On visiting the neurologist I asked whether there could be a connection between the neck problem, whether muscle or nerve (yet to discover) and the esophageal dysmobility. He seems to think there's no connection between the two. Could this be simple coincidental!?

I am due to have another CT scan at the end of the month to determine what is causing the pain. I'm really hoping I will get a more concrete answer and maybe with this I could push to see if further tests could be done so that I can be sure they are not related.

I'm so pleased that you have mentioned the Vagus nerve. I have also looked into this and I wonder if this is something I could raise with the Neurologist?

I feel the Mantometry would be a benefical test to have done next, although I have heard many unpleasant things about it. I'm just really hoping for a test which can finally show something. During the period that I had both endoscopies done, I had put myself on a very strict diet, which subequently made me lose a lot of weight very quickly. I'm just wondering now if the strict diet and sudden weight loss may have affected the results. I will hasten to add though that during my PH Bravo test, I deliberatly ate and drank foods, like chocolate and coffee for 48 hours, so that it would encourage bouts of relux. But incidentally, it didn't.

I briefly spoke to the ENT specialist about allergies and he felt this wasn't something I was suffering from. He believed I would be showing other symptons like face swelling. At the time he did ask for some blood tests to be carried out, which I had done. The only thing that came back was my iron/ferritin levels were this time very high and my GGT was 46, so slightly above recommended level. My ferritin has been checked again recently and they are currently at a safe level.

The only thing I'm trying now is testing the Pepsin theory by taking Gaviscon advance after each main meal and before bed.

Thanks again for your advice- I really do appreciate it

[Hidden in reply to Redpanda8]

Yes, I think the neurologist's advice about the vagus nerve system would indeed be helpful.

It would be possible for the nerve endings that drive some of the peristalsis muscles to be affected, and the manometry test would measure the pressure they exert down the length of the oesophagus. I would have imagined that this, and the barium swallow, would give the doctors a good picture of what is happening, but my view is invariably distorted by working backwards thinking about people who have certain conditions; rather than forwards from symptoms like the doctors have to do with their diagnosis.

[Redpanda8 in reply to Hidden]

Thanks again, will definitely follow this up with both the manometry test and the vagus nerve.

[focused1]

Nearly 4 weeks ago I had hiatus hernia surgery . The tests you had - most are similar to mine but they picked up the tear early on . Mine - if I'm honest was mainly caused by my weight creeping up and up over about 15 years . I am really sorry if this isn't a problem for you but it was a wake up call for me as I don't smoke and my alcohol intake is only occasional . I have now modified my diet as after surgery it is liquids then soft foods for a least a month. What a wake up call . I feel healthier and am 5kg lighter .

[Redpanda8 in reply to focused1]

Hi Focused1

My GP initially thought my problem could be due to a Hiatus Hernia but both endoscopies luckily ruled this theory out. Thank you though for the suggestions. It sounds like you are now in the latter stages of your journey, which seems to be now a postive one. I hope you heal quickly from the surgery and you can get back to a normal and healthy life.

Best wishes to you

[gutlesswonder]

We don't have your age, height, weight or other history which may have a bearing

You have been very thoroughly and professionally examined which is great. So far so good.

However I suggest that there is some confusion - the investigations did not detect any signs of damage from reflux ( such as changes in the cells lining the eosophagus [displasia] ) but that does not mean that you are not experiencing reflux. It simply means that, for whatever reason, any harm is not yet visible.

So it is reasonable to follow the advice of both the consultant Gastroenterologist and your GP. Taking both drugs can do no harm, at least in the short term, they both could be right.

The symptoms you recite are absolutely the classical manifestations of reflux.

I guess (I am not medically qualified) that you have LPR or silent reflux. Frequently this can take the form of an aerosol rising up into the throat, not even a liquid. It may be that the noxious element is not acid but pepsin ( arising in the stomach) or bile and/or pancreatic juices arising in the duodenum. This would explain the preponderance of sinus and ear symptoms.

Remember that PPIs only combat acid, not pepsin or the other corrosive possibilities.

A way to seek some validation of this hypothesis is to implement the commonly recommended lifestyle changes of early and light evening meal consumption, together with raising the head of the bed etc, etc.

Try these, if you haven't already and see if it makes a difference.

Another indicator is timing. If the occurrence commences 3 or 4 hours after retiring then the driving force is likely to be something called the MMC ( moving motor complex ). This is too complicated to explain here but could be summed up by saying that, during sleep, the entire intestines undergo a quite vigorous, deep cleansing routine in order to prepare them for the next day's ingestion of food. This often has the side effect of pushing chyme (semi-digested food) up as well as down.

The barium swallow is of little significance here since it only detects reflux during the duration of the swallow - not in the middle of the night! However, the moderate dysmobility which that procedure did detect is notable.

It may be that in the final analysis you will need fundoplication, a surgical procedure to improve the working of the leaky lower eosophageal sphincter valve.

To achieve a final analysis you may have to make quite a loud fuss, but you have done well to get this far.

This is relevant:-

healthunlocked.com/oesophag...

[Redpanda8 in reply to gutlesswonder]

Hi gutlesswonder

Thanks very much for replying too. I'm a 38 year old female. 5"2 and currently weighing an embarrasingly 9 stone 12.

Most of my problems started about 8 months after having my second daughter. I had started to feel unwell for sometime and after many visits to the doctor and a blood test later, it was discovered I was suffering from low ferritin levels. I was also having problems with a pain in the side of my neck (right side) which would at times cause shooting pain up the side of my head and creating headaches as well as pins and needles in my right arm and hand.

I'm currently seeing a neurologists and having a CT scan at the end of the month, which will hopefully help with detecting the cause of the pain in my neck, and maybe help to discover whether this is also a cause of my esophageal dysmobility. I have too always suspected silent reflux but this has never been brought up as a possibility by any of the professionals. I think my GP is the only one that has mentioned the 'aerosol' effect but didn't specify pepsin per se. I'm just wondering now if I should have mentioed LPR to my ENT guy. Is it a recognised problem amongst the professionals in the UK?

I did have a pepsin test done through a company online and this came back negative. Although, to be honest I'm tempted to do it again.

I had adopted the light more frequent meal approach, which sort of worked but now I'm back to a very normal diet. I have raised my bed in the past but stopped after being told the tests were all clear. I do however have a thin duvet foldered under two pillows which keeps me slighlty propped up at night. The funny thing is, my two children are the only thing that keeps me up at night. My chest feels a little uncomfortable if I sleep either side so I tend to stay on my back. In the morning my throat seems better from the day before and the only thing that seems to be a problem is bleeding gums. Admittedly as soon as I eat anything very sugary or have a hot drink the pain and irritation starts all over again.

I have been to another gastro specialist for a second opion but he refused to reapeat any of the tests because he believed they would only come back with the same results.

Am a little worried now that now one will take me seriously

Thanks again for your reply and best wishes to you