Hi, my name is mcdonald751! I have achalasia and would like to get in touch with fellow sufferers — Scope | Disability forum
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Hi, my name is mcdonald751! I have achalasia and would like to get in touch with fellow sufferers

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mcdonald751
mcdonald751 Community member Posts: 2 Listener
edited January 2022 in Rare, invisible, and undiagnosed conditions
Hi, I have achalasia and would like to get in touch with fellow sufferers
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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    Hello @mcdonald751

    Wishing you a warm welcome, it's nice to see you join and that you have already gotten involved in another discussion about your condition. This is a very supportive and welcoming place so I'm sure you'll enjoy getting involved.

     I hadn't previously heard of achalasia until doing a quick search just now, how long have you had the condition? 

    If you ever have any questions about the community then please feel free to ask, and I look forward to seeing you around.
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  • annk
    annk Community member Posts: 7 Listener
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    Hi i am waiting on a manometry test for achalasia, but i have all the classic symptoms and its horrific.
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  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,251 Pioneering
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    Hi @mcdonald751, 

    How are you today? Thank you for joining the community and I'm sure some of our other members will hopefully share their experiences of the condition too :) 

    I'm sorry to hear that you're struggling with achalasia @annk, I hope the test won't be too painful and you will be able to get some answers from the test, relatively soon. 

    I will move this thread into our 'rare, invisible, and undiagnosed conditions' category in the hope that our other members will join in on the discussion too. 

    Libby
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  • annk
    annk Community member Posts: 7 Listener
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    Thanks Libby.
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  • ben1982
    ben1982 Community member Posts: 5 Listener
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    Hi @mcdonald751, I am a fellow achalasia sufferer since around ‘99. 
    It has been quite a struggle and honestly speaking other than the initial relief the key hole surgery removing the muscle of my gullet is something i wouldn’t have had done as now I suffer from chronic heartburn. 
    Hope you are well and manage the condition as well as you can. 
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  • mrsmac1
    mrsmac1 Community member Posts: 2 Listener
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    Hi. I had an endoscopy on Saturday for a suspected hiatus hernia but they think I have achalasia instead. I am being referred for a barium test and then go from there. I was told not to eat solids which was really disheartening to hear. So I am finding foods I can cook that can be blended to a thick gloopy texture so I can eat. I haven’t been able to eat or drink much of anything for the past 6 weeks and the weight is coming off pretty quick. I’m hoping for a treatment that will allow me to eat solids again. X
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    I hope your treatment does allow for that too @mrsmac1 thanks for sharing with us.

    I know that not knowing what something is can be quite unsettling, but hopefully you'll get more concrete answers soon, after your barium test. Do you have very long to wait?

    I can imagine no solids must be quite a big change to the diet, what foods are you finding work best, if I may ask?
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  • mrsmac1
    mrsmac1 Community member Posts: 2 Listener
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    So far I have been okay with porridge, and potatoes and meat blended. I don’t know how long I will have to wait but from my initial symptoms to my endoscopy was only about 6 weeks. I was managing to eat some solids for the first couple of weeks but then 4 weeks ago I started vomiting every day, waking up choking and vomiting in the night which is scary. In 4 weeks I have lost 16.5 lbs. I keep having really bad dizzy spells and feel really weak. I am due back to work this week after 3 weeks off, but I’m worried about it as I get exhausted just walking round the supermarket. 
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    I'm glad it wasn't too long before the ball got rolling for you, hopefully not too long until the next part! Can you tell me, have you been keeping in touch with your GP and any specialists during this time @mrsmac1, as it might be worth sharing your concerns with them. 

    I wish you all the best for your upcoming test, and do let us know if we can support you further.
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  • Debs250
    Debs250 Community member Posts: 5 Listener
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    Hi.
    I'm new to scope and looking to see who else has achalasia. 
    I've been diagnosed about 20 years now so think I'm pretty used to it!!
    I've had a hellers myotomy and Nissan fundoplication unfortunately it didn't go too well and I have regular dialations 🤷‍♀️🤔.
    If you have any questions please ask 😃
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  • Debs250
    Debs250 Community member Posts: 5 Listener
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    @macdonald751
    @mrsmac1
    @ben1982
    @annk
    Just wanted to touch base. Hope you are all doing ok on your warrior journey? 
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  • wildnat123
    wildnat123 Community member Posts: 6 Listener
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    mcdonald751 said:
    Hi, I have achalasia and would like to get in touch with fellow sufferers
    Hiya I have achalasia too I have for over 15 years, I feel for anyone with this awful condition 
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  • wildnat123
    wildnat123 Community member Posts: 6 Listener
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    Debs250 said:
    Hi.
    I'm new to scope and looking to see who else has achalasia. 
    I've been diagnosed about 20 years now so think I'm pretty used to it!!
    I've had a hellers myotomy and Nissan fundoplication unfortunately it didn't go too well and I have regular dialations 🤷‍♀️🤔.
    If you have any questions please ask 😃
    What helps you with the pains like heart attacks, really cold water helps for seconds but the pains can last hours sometimes, cold milk used to help me but not anymore
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  • Gillian88
    Gillian88 Community member Posts: 12 Connected
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    Hi I have suffered for 11 years but most undiagnosed as I was 19 when it started and was told I had an eating disorder. I am 2 years on from my heller myotomy and fundoplication and my symptoms have returned last week and I’m struggling to even get fluid in so I have an emergency appointment with my surgeon. It’s scary because although I have had this condition a very long time I still don’t understand enough about it and I’m a mum to a young boy and it scares me that this might be it for me. Does anybody have anything they can educate me on or can they do the surgery a 2nd time?? The wait to see my surgeon is 2 weeks away and it feels like years. P.s I’m so glad I found this 😊 

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