No one will help me.

Hi there guys, I'm back after a long break, I've been steadily getting worse. As many of you know, I've had the usual tests done, upper GI, barium swallow, GI under anaeasthetic, manometry and PH testing. All that came out of it was I have decreased pressure in the lower oesophageal sphincter, and a slight hernia.

The painful throat symptoms are worse. Sore sore throat and ears most of the time, the pain is so bad I want to cry. My stomach hurts a lot when I eat, and I am now experiencing a blood taste in my mouth of an evening, with a wheezy feeling in my chest. I get pains in my chest too, and the most terrible belching. I belch explosively all the time.

My ENT recommended I have the wrap, but said he can't refer me directly, so referred me to the GI. The GI told me my throat symptoms were purely from work (teaching) and tried constantly to put it down to stress. He accused me of "looking on Google for symptoms" and frightening myself. He thought I was only there because I thought I was going to get cancer. He also tried me on amitryptiline, which did nothing.

All this has been ongoing now for about 3-4 years. I was put on rabeprazol, which quells my acid but not the belching and none of my throat or wheezy symptoms have been helped.

So, I went to my ENT in Feb, who discharged me. He said he could see changes in the larynx that could be attributed to reflux, bu the had referred me to the GI and that was as far as he could go with me. So the next visit with the GI came up, and he also discharged me. He said he can't recommend me for surgery, because some people still have symptoms afterward and there would be no point, and because I am young he doesn't want to cut me open. This was in March.

I have since deteriorated. My reflux meds gave me severe anaemia, and so I was told to try not to take so many, and have breaks from them. My throat is raw and red all the time, I have no energy, and I just cry a lot. My children don't have a mother, my husband doesn't have a wife. I am limping through life and just don't know where to turn. I feel I have been robbed of a life. I am only 36 and I feel twice that. My face looked drawn and weary, and my hair is falling out, I am greying very very quickly too. I wonder now who is right? Was the ENT wrong, and my throat problems are something else that he has missed? Or is the GI wrong, and it IS acid?

How can I make these people help me? I am not sure I can get a 2nd opinion, because the GI was the top man in the gastro unit. Who else can I turn to? I just cannot believe I have to live like this!

Thanks for listening

Liz x

Am so sorry to hear of your troubles. If you are in the uk you are entitled to a second opinion. Go back to your GP and say you're not in a liveable situation and still need help. Double check that Helicobacter has been excluded. Double check that they have tested your thyroid.

My gastritis makes me anaemic, but I get a higher haemoglobin on ppis. They seem to help not hinder the anaemia. Are you sure you are not losing blood from lower down the GI tract?? The anaemia should not be dismissed as just due to the drugs; push for a clear cause on that too. A haematologist or possibly your GP can tell from your blood results if it looks like you have iron deficiency or chronic blood loss. Look into it. Also, speaking from personal experience, the anaemia makes you feel very cold, very tired and very low mood.

Anaemia and thyroid problems can interrelate; make sure your thyroid function is ok.

Your whole body can be affected by the anaemia; try to treat that too. Don't ignore it as a "side effect" of GERD and meds.

If you are in the UK, I can give you more tips on how to work your way through the system. Please keep knocking on your GP or PCP's door, have a clear agenda when you go or have an advocate with you if you don't feel strong enough. But keep knocking on their door, and ours too!

MMM

Zelda, You remember me telling you long ago, "the squeaky wheel gets the oil". So squeak loudly! :)

Thanks for your responses guys.

Ashley, yes I am in the UK. I think you are right I am in definite need of a second opinion, that will have to be my next move.

MMM, Yes, I had the Helicobacter test and thyroid checked, both came up normal. I am just feeling so confused and lost! The problem I am having is that I went to the GP initially 4 years ago because I couldn't sing anymore, and I had a croaky throat. It went from there to a globus, which got the ENT involved, who thought acid might be the issue. The trouble is, once I was sent to the GI, the throat things got ignored, and all the acid tests came back normal, leaving me to wonder if the throat problems have been properly diagnosed. It is the throat problems I wanted fixing, but everyone has forgotten that. So I am worried that an operation won't fix it. I think a clear agenda is what is missing here.



daddypig, the reason my GI gave for not recommending the wrap was that he said there was insufficient data from the tests to warrant it, and that he felt the side effects would outweigh the benefits. I don't know how I will feel afterwards, but I am certainly suffering horribly now!

Hi Joy, yes, I do remember you saying that, and I have since been making a lot of noise, but sadly my GI thinks I am just a psycho stress head, and a "cyberchondriac". I can't live this way though, so I must make more noise :(


Hi Jesse. I agree with you, they do not understand the problem. I have heard that LPR sufferers often come up as normal in alot of tests, and the ENT seemed to understand this well, sadly the GI is a very condescending and arrogant man, who clearly doesn't appreciate another consultant telling him his job. He was constantly in touch with the GI, but the latter wasn't receptive. I never mentioned the internet to him, or even that I had heard of LPR, but he judged me nonetheless. He asked me about my family life, and when I said they were very supportive, he replied, "Oh come on! You have 2 sons don't tell me they don't stress you out!"

Anyway, thank you all so much for your replies. It has been very hard to keep up the fight, esp since I have to cycle miles to the hospital for my appointments, it is very wearing. I feel a renewed determination to get help, thanks for the encouragement.

Liz x

Post Edited (zeldagoblin) : 8/24/2011 1:16:14 PM (GMT-6)

Do you know how much that would cost MMM? I have thought about private but I am really in no position to pay and have no health insurance. Thanks for your input

Liz xx

PS: Sorry, fees probably higher if you in London area!

I see, well I think I will start by going to the original guy and saying I can't live this way. He did say I could go back "whenever I like". I'm not sure how sincere that was but I intend to take him at his word.

I find it all so confusing, I need THEM to tell me that an operation is the right way to go. I don't know because I still ave no idea why my throat and ears are so sore and my chest is wheezy at night. If it IS caused by LPR, then I wish they would tell me that!

I am back in the doctors on Monday to ask for a re-referral. Wish me luck :o)

Strangely, my case was the exact opposite. The "Mr" was the ENT consultant, who was lovely. Very personable, gentle, and extremely sympathetic. The GI guy is a "Dr", and is the most arrogant and condescending man I have ever met. He isn't the surgeon who performs the Nissen though, he is the one who can refer me. I am going to ask if I can at least talk to the surgeon himself, and see what he thinks.

im so sorry for your pain and fear...im there

what are your options for a procedure?... fundoplication...linx?