Hi, my name is matt and I'm suffering with dysphagia — Scope | Disability forum
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Hi, my name is matt and I'm suffering with dysphagia

mynameismatt
mynameismatt Member Posts: 4 Listener
 I was diagnosed with dysphagia 4 years ago now, I am 35 and it just came out of nowhere just woke up one morning and could not eat. My life changed forever that day. At present I am living back at home with parents because I cannot cope, I am having numbness and pain in my throat which the doctors said is thrush? Took medication but it did not help, actually made it worse so now I have not eaten in 3 days. Doctors said its psychological and have left me to suffer alone but last night the pain and irritation was so bad I could barely breath. I was managing my dysphagia well until this pain and irritation started 6 months ago.  I also have held down a job but recently had to take time off because of this. Sometimes its so bad I can barely drink without aspiration. I never let anything get me down but this has made me cry many times. If anyone has advice to get rid of the painful or irritated throat please share it with me because I can't live like this its driving me to the brink of something drastic. Other than that I saw ENT 4 years ago barium swallow 4 and 2 years ago all fine apparently well an abnormal swallow but not been able to see anyone about the throat pain dry prickly sensation only a prescription over the phone again didn't help. I would not wish this on anyone, I just want some relief because i cant even sleep with the dry painful or numb throat my head is going to explode I just want to relax, no one deserves this and I'm so frustrated that there seems to be no medical help whatsoever.

Comments

  • Tori_Scope
    Tori_Scope Posts: 6,145

    Scope community team

    Welcome to the community @mynameismatt :) I'm sorry to hear that this problem has been ongoing for so long.

    Could you ask to be re-referred to an ENT specialist? Is your GP aware that your condition hasn't improved, and that it's preventing you from eating? 

    When the doctors said it was psychological, did they explain what they meant by that? Did they suggest any routes of getting a diagnosis or treatment for this? 
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  • mynameismatt
    mynameismatt Member Posts: 4 Listener
    Hi, yes the called it psychogenic dysphagia, was referred to dietitians and speech language therapy but that hasn't helped also referred to mental health groups and yes I can understand why for the dysphagia but for this sensation in my throat which is at this point not going away at all I don't understand why I'm not being helped. I honestly thought I would die last night my breathing was shallow the pain and dry throat was unbearable. I could ask to be referred to ENT again and see what they say, I need help soon because I'm exhausted physically and mentally 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,614 Disability Gamechanger
    Hi @mynameismatt - welcome to the community. I'm very sorry to read about what you're going through; it must be very distressing indeed. I know it's likely difficult, but are you managing to keep yourself hydrated? Perhaps frequent sips might help, if you can manage that.
  • mynameismatt
    mynameismatt Member Posts: 4 Listener
    Thanks, I'm trying but it can be difficult,today Is the worst its ever felt,  I've had 300ml of water since I opened a bottle this morning, and I've probably wasted most of that being upset. I should be enjoying my life at my age but instead I'm being held prisoner in my own body.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,614 Disability Gamechanger
    That' great you're trying to drink; I do appreciate it won't be easy.....perhaps try a straw.  Have you spoken to your GP in the past couple of days about your worsening symptoms?
  • Tori_Scope
    Tori_Scope Posts: 6,145

    Scope community team

    It's completely understandable that you'd be upset @mynameismatt, as this is clearly having an effect on your quality of life. I'd definitely encourage you to speak to your GP as chiarieds has mentioned, and ask to be referred to an ENT again if they agree that's the best course of action. It'd be worth mentioning that you've already been down the dietician, SLT, and mental health support routes but that the sensation in your throat is persisting. 
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  • mynameismatt
    mynameismatt Member Posts: 4 Listener
    Yes I will thankyou.I have no quality of life at the moment but I hope one day I can get out of this situation. 
  • faz12
    faz12 Member Posts: 1 Listener
    Hi Matt, just wanted to message to say, I am going through the same thing at the moment after a tablet mishap in February. I’ve had all the tests and they can’t see the problem, as I suffer with anxiety anyway they have too labelled me psychogenic dysphasia although I have all these physical symptoms and problems swallowing everyday. I totally understand what you are going through, please just take it day by day. If you can get your dr to refer to speech and language to help you. Mine has improved slowly - I’ve been from the point of starvation and dehydration and now managing to live on soft food/ liquid diet of thick soups, smoothies and small cheesecakes or yogurts. My SLT told me to have ice lollies or ice creams as it stimulates the swallow a bit more and keeps your fluids up. I too struggled with liquids, have you tried milkshakes or smoothies something a bit  thicker or soft foods seems to help me. I hope you’re doing ok, and find a way through. 

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