Another doctor has refused to treat my LPR

Another UK doctor has refused to give me LPR surgery. Despite the fact I have symptoms bad enough to take away my work life and independence, and despite a positive impedance and Peptest, nobody will give me LINX, or any other surgery for that matter.

All because my manometry was normal. I've read journals saying how LPR sufferers had 100% normal manometries, but the specialists I've seen won't listen, and keep writing me off with anxiety.

I don't mean to sound dramatic, but I'm having very dark thoughts recently, brought on by the prospect of having incurable LPR for a lifetime. I have no idea where to turn to next. I'm out of money, my GP thinks I'm mad and won't refer me anywhere else, and I can't get the one thing that might fix my LPR. I can't stop crying as a result. What should I do?

Unfortunately it's not just my GP that won't help, it's the surgeons who could give me the LINX! They claim it's multi factorial and anxiety related. None of them are willing to take the risk to help me, despite the fact I've been suicidal more than 4 times because of LPR!

LAWCHICK said...
What are your symptoms and what does your diet consist of? Are you on medication? Also I know you mentioned the GP won't refer you anywhere else so maybe if you try out another they can recommend you see a different specialist? I have autoimmune issues which I think fuels my issues and no dr wants to take the risk to help me either so I know exactly how you feel. It's like banging on a door of a house that you know is full of people but no one is willing to open the door to help you. Sometimes I have had dark thoughts myself but I'm not at the point where I'm ready to give up even though sometimes I feel like it. I am hoping this natural remedy I'm starting will help. Also have you thought about seeing a therapist? I have been seeing one and while it's not helped at all with my swallowing issue it does I think help me feel like I need to go on and beat this since my therapist actually does believe it's a physical issue. If you are having these types of thoughts you may benefit from talking to someone face to face about it too.

Also have you ever tried gaviscon? I find it helps me if I take it at night before bed.

Currently I'm plagued by severe shortness of breath, never ending mucus and throat clearing. I also get gas, ear pain and sore throats. A single belch triggers my symptoms. At its worst swallowing issues play a part too.

I do still take Gaviscon Advance and alkaline water, but the PPIs made me worse so I no longer take them.

Daxter, I'll start by saying I'm not at all trying to imply that your symptoms are being caused by anxiety and/or depression.

Living with long term illnesses like LPR, especially without being able to make progress with treatment, takes a HUGE toll on your mental wellbeing and its not at all uncommon for someone to develop depression and anxiety as a result of this. As someone who has been dealing with anxiety and severe depression for half my life, including multiple (obviously failed) suicide attempts, I could not recommend highly enough booking an appointment with a psychiatrist and addressing it right away because therapy and medication take time, and your mental wellbeing affects your physical health. The reason I say psychiatrist is because they know the ins and outs of all sorts of therapies and treatments that PCP's don't. They can specifically tailor treatment to you rather than just giving you Prozac and sending you on your way. They will also be able to refer you to psychologists who specialised in therapies other than cognitive behavioural therapy, if that is what is need. The most valuable thing I have found with the psychiatrists is that they can give you a more definitive answer as to whether any of your symptoms could be caused by anxiety or depression. It was thanks to my psychiatrist that I got much needed treatment for an atypical migraine condition that my neurologist was trying to pass off as psychological, but thanks to her I was able to undergo testing to prove it, and eventually put on treatment. They are after all trained to know what the physiological effects of mental illness are, and can better determine what it is, or isnt, causing.

Your symptoms sound a hell of a lot like mine, especially the severe shortness of breath. Do you find that the shortness of breath gets worse if your heartrate gets up, either by moving around or from stress? Many of throat and airway symptoms can be exacerbated by anxiety because of the physical affect it has on the body. If your shortness of breath is result of something like a spasm, an increase in heartrate would speed up the spasming, making your airways feel more obstructed, so its not that anxiety causes it, anxiety just makes it worse.

Do you know what the reading on your manometry for UES pressure was? An overtightened UES can cause swallowing problems which aren't detected as an issue on manometry except for a higher than normal UES pressure. Thats what causes my swallowing problems and its not all the time, it happens when I'm regurgitating a lot because the UES overreacts to reflux and tightens to attempt to prevent anything getting past, but while its in this state it doesn't completely relax as it should when you swallow, which makes you start choking on even small amounts of food, or it getting stuck at about where your collar bone is.

The last thing I'll say is that many doctors don't know how to deal with you when anxiety and/or depression is on the cards, and they often jump to rash conclusions about the effect it is having on your condition. It doesn't help that LPR is such a tricky problem in the first place so they seem to take the easiest route out. The best thing you could do for yourself now, is to see a psychiatrist so they can help you to start managing the depression and anxiety. They may even be able to talk to surgeons or other doctors on your behalf to tell them that its not what is causing your LPR.