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Hi from Peter in Nottingham

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  • Marc from London
    replied
    Hi Peter.

    i know how this feels. But I have had my diagnosis already. So hopefully for you you will not have something MND related.
    i too have children they are 11 also quite young. I have been diagnosed with ALS but with what seems with slow progress. I still work and have not told anyone there yet. Stay strong

    Best wishes
    Marc

    Leave a comment:


  • PeterPan
    replied
    Originally posted by PeterDaviesNotts View Post
    it's great to see how your life has gone on and had happy and meaningful times even with this illness.
    Hopefully you haven’t got this illness, Peter. But for those of us who have had the diagnosis, it’s not the end. It’s the beginning of something new.

    Leave a comment:


  • PeterDaviesNotts
    replied
    Originally posted by Ellie View Post
    PeterDaviesNotts What did your GP say Peter?
    Hi Ellie, they wanted to do bloods and poo sample first. They came back fine so after that the private GP was happy to refer, the NHS doc was happy to refer to Neuro before bloods. I have one referal on NHS pending and I am going to get a private one sooner so I have two opinions and fast track to a degree. My concern is the test costs privately as my insurance is through work and not yet approved and only up to £1k diagnostics.

    Leave a comment:


  • PeterDaviesNotts
    replied
    Originally posted by PeterPan View Post
    Welcome Peter. As you know there are other diagnoses and you may have something entirely treatable. I didn’t have any digestive issues before diagnosis by the way.

    I can understand why you are trying to hide the symptoms but perhaps you don’t have to and I’m sure it’s a big effort. People may be noticing that you’re not your normal self and arguably it’s better that they know about your concerns so they can give you support.

    it’s great to just take one day at a time. Best wishes
    Hi Peter, yes it's quite difficult but I want things to remain for as long as possible. Your blog is brilliant by the way, it's great to see how your life has gone on and had happy and meaningful times even with this illness. I hope I'm a strong and courageous as you if I get the diagnosis.

    Leave a comment:


  • Ellie
    replied
    PeterDaviesNotts What did your GP say Peter?

    Leave a comment:


  • WheelsOfSteel
    replied
    Hiya PeterDaviesNotts
    Here's hoping that we DON'T have to admit you to our exclusive little club.

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  • LindaB
    replied
    PeterDaviesNotts try not to 'jump the gun'🙏

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  • Aidan in Shrewsbury
    replied
    Hi Peter. Welcome to the country no one wants to be in. You will find this a friendly place full of good advice and kindred spirits.9

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  • PeterPan
    replied
    Welcome Peter. As you know there are other diagnoses and you may have something entirely treatable. I didn’t have any digestive issues before diagnosis by the way.

    I can understand why you are trying to hide the symptoms but perhaps you don’t have to and I’m sure it’s a big effort. People may be noticing that you’re not your normal self and arguably it’s better that they know about your concerns so they can give you support.

    it’s great to just take one day at a time. Best wishes
    Last edited by PeterPan; 31 March 2022, 12:35.

    Leave a comment:


  • matthew55
    replied
    Hello Peter. Wait until the large lady starts singing. Where there is life..... Good luck.

    Leave a comment:


  • PeterDaviesNotts
    started a topic Hi from Peter in Nottingham

    Hi from Peter in Nottingham

    Hi, I'm awaiting referal at the moment, but I'm 99% sure I have MND/ALS.

    Injured my knee a few weeks ago and then noticed why, my calf is wasted towards the lower portion. I have most of my strength probably about 80% but I have most of my body effected including my jaw (tiring chewing big meals) and some tightness in the back of my hands. Also have constant rippling cramp in the effected calf and the thigh above it started soon after. I wake up with twitching and cramping in my neck also.

    I didn't realise that some while ago I was already a bit hoarse and struggling with swallowing when in bed laying down, really not sure which came first, the leg or the bulbar stuff. I thought I've been loosing my confidence and fluffing up words in the office, I can talk just fine and maybe it's anxiety but it does seem one hell of a coincidence.
    I'm also loosing weight even though I'm trying to put it on, lost about 7kg in 6 weeks. Did anyone else have digestion issues long before other symptoms, as I have had for a long

    Anybody know the details of Nottingham area based consultants and departments. I'm trying to get to see David Paling in Doncaster as I think I will be waiting a while on NHS!

    This really is my worst nightmare, I'm sure likewise for most. I have a 5 and 7 year old, and when I just about have it together I think about telling them and not being there for themand it breaks me all over again.

    Trying to make good memories and take one day at a time.

    Still at work at the moment and trying to hide the symptoms until I have a diagnosis, it's hard. Ot spending every available minute with my wife and kids.

    ​​​​​​​I guess my next steps are consultation and EmG etc to confirm.

    Thank you all and my best wishes for your struggles.
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