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Very concerned about my symptoms

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  • Deb
    replied
    So sorry Gary.

    You're right I meant to say Guy. Thank you for putting me right.
    I wish with all my heart you didn't have MND too.

    Love Debbie x

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  • GaryM
    replied
    Originally posted by Deb View Post
    Hi Gary,

    Its great news you don't have MND. I really hope you have the tests you need and get some answers soon.

    Thanks for keeping us updated,
    Love Debbie x
    Think you're getting me mixed up with Guy, Deb

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  • Deb
    replied
    Hi Gary,

    Its great news you don't have MND. I really hope you have the tests you need and get some answers soon.

    Thanks for keeping us updated,
    Love Debbie x

    Leave a comment:


  • Lynne K
    replied
    Guy, Iโ€™m very pleased that you donโ€™t have mnd and good luck with finding out what dammed thing it is so that you can get on the right treatment quickly, love Lynne

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  • manfromcowes
    replied
    Thanks Ellie. You're right of course in regards to getting this done and getting a diagnosis and treatment.

    Gary thanks for this - much appreciated. I will have a look at this link and have a read. I'm so sorry to hear your diagnosis has gone the wrong way for you. I hope it's slow progression.

    Matthew always good to hear from you and your positivity!

    I will crack on and get this test done guys and report back when I have any results or feedback.

    Take care in the meantime

    Guy

    Leave a comment:


  • Ellie
    replied
    Originally posted by manfromcowes View Post
    He said he I don't have mnd but that he feels some sort of neuropathy is going on. He wants me to have a emg and nct asap.
    You don't have an MND, that is such good news for you.

    It makes perfect sense to have an EMG & NCS if a neuropthy is going on - the sooner the diagnosis, the quicker the intervention.

    Hope you find answers soon.

    Love Ellie.

    Leave a comment:


  • GaryM
    replied
    Guy, have a look at this link. I was first diagnosed with CIDP in October 2019. I originally suspected MND, but consultant thought CIDP more likely. There is treatment for CIDP but after two treatments, with no effect, he started to doubt the diagnosis. Finally, after the third EMG and NCS in July, he concluded MND more likely. I don't fault the doctor in any way, it's very difficult to come to a firm diagnosis quickly. He said that if he diagnosed MND and then later it turned out to be CIDP I could have wasted time not being treated, which would be worse. I had no pain or loss of sensation in my hands just weakness, which was why I always suspected MND.

    https://www.doihavecidp.com/en/cidp-...s-misdiagnosis

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  • matthew55
    replied
    The debt every man has to pay. But at least we can have fun getting there. ๐Ÿ‘

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  • manfromcowes
    replied
    Thanks Mary, much appreciated.....and Matthew ....they so nearly did!

    Ok......so I saw my neurologist on Thursday. I spent first 15 minutes going through chronological order of symptoms and their progression.

    He did a examination...strength tests in limds, fingers, reflexes, walking toes, babinksi and hoffmann tests all were good. The one test I failed on was the Vibration Sense Test to my big toe and boy part of my ankle with a tuning fork. I could not feel vibrations on either foot.

    He said he I don't have mnd but that he feels some sort of neuropathy is going on.

    He wants me to have a emg and nct asap. This surprised me. I though blood tests and mri of head and spine were the first tests done.

    I'm obviously concerned why he wants me to go straight to an emg. As good as it was to hear him say that I don't have mnd....my symptoms continue...the right leg catching up quickly with the left with stiffness and percieved weakness. Sporadic twitching. Numbness sensation in toes increasing as pain, aching and burning sensation in both lower legs.. esp shins and ankles.

    He hopes I can get it done before Xmas. So that's where I am atm guys. Any thoughts or observations gratefully received.

    Hope you all have good weekends.

    Take care

    Guy

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  • Mary C
    replied
    Good luck with neurology appointment. Pre diagnosis of anything is a stressful time Best wishes from Mary

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  • matthew55
    replied
    My day will be completed if my Tottenham get the win ๐Ÿ˜ƒ

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  • manfromcowes
    replied
    I laughed at that Matthew ๐Ÿ˜‚ there's an upside to everything I guess! Hope you're having a good Sunday

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  • matthew55
    replied
    I should point out that I am 55 and 11st. First time since being a teenager. ๐Ÿ˜ƒ

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  • manfromcowes
    replied
    Lynne and Matthew, I really appreciate your replies and advice. Thank you. I will see what Thursday brings and go from there and report back. Thanks again. Guy

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  • Lynne K
    replied
    Hi G, Iโ€™m sorry about your worrying symptoms and your understandable anxiousness. My start of MND was nothing like youโ€™ve described but we are all different. One thing that I will say is that whatever symptoms you have got missing out on sleep is likely to not help at all. Itโ€™s harder said than done but I would try to put it all out of your mind and do some sleep hygiene things to try to make your sleep more regular. Good luck with your neurologist appointment. Keep in touch and take care, Lynne

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