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Hi, my name is MISSIEEE!

MISSIEEEMISSIEEE Member Posts: 11 Listener
edited December 2020 in Cerebral Palsy
I’m 52 and obtained my records from greatormond st hospital as I had a operation there when I was 2 for spinabifida, my mother never took me to follow up appointment (terrible) and my milestones weren’t good either, could walk only couple steps. Thru our my neglected child hood I knew something wasn’t right with myself, spent years thinking I’m mad. Been alcoholic for 12 years n I stopped almost 7 months hence y I can investigate myself properly as me n my mother stopped talking when I was 14.In a nut shell the balls rinally rolling had appointment to see a neurologist who disagrees with my doctor but herself and her boss seen to think I maybe cerebral palsy from birth. Have eeg tomorrow then mri with full spine on 12th dec. what does all this mean at my age n if it does come back as I am does that mean I’m not mad or psychotic aftterall? I’m so confused right now. Have the letter if that’s of any use. Ty for taking the time to read this
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Replies

  • janer1967janer1967 Community champion Posts: 6,175 Disability Gamechanger
    Hi and welcome sorry I cant advise but will tag our CP advisor who should be able to help 

    @Richard_Scope
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  • chiariedschiarieds Community champion Posts: 6,292 Disability Gamechanger
    edited November 2020
    Hi @MISSIEEE - & welcome to this great community. I can't imagine the distress all of this must have caused you. 2 years old seems somewhat late to have an op for spina bifida, but perhaps it wasn't considered until then.
    A MRI may rule in/out spina bifida, but may not necessarily be a positive/negative indicator of cerebral palsy.
    I'm really sorry you've questioned yourself, but it's great to read about your recent sobriety.....good for you. Hopefully you will get some answers soon, & find out what your physical problems may be. Please kindly stay in touch, thank you.
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  • Cher_ScopeCher_Scope Community Team Posts: 2,424 Disability Gamechanger

    Hello @MISSIEEE and welcome to our online community.  How are you today?

    Thank you for sharing your story with us.  I'm sorry to hear about your relationship with your mum and the issues you have faced growing up.  You should be very proud of being 7 months sober, that's a great achievement!  Well done you :)

    It's good to hear you are having your medical symptoms investigated and I hope the tests you are having done can provide some answers as this must be something that has played on your mind over the years.  

    Until you have your test results, maybe browsing the discussions in our Cerebral palsy chat will help through reading others stories and their tips for coping with symptoms.

    Good luck and please let us know how you get on.  

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  • Richard_ScopeRichard_Scope Community Team Posts: 2,489 Scope community team
    Hello @MISSIEEE
    Good to meet you. Do the medical records from Great Ormond St actually state a diagnosis of Spina Bifida? Cerebral Palsy and Spina Bifida are two very different conditions, but it is possible to have both conditions at the same time.
    MRI will not always show damage indicative of Cerebral Palsy but it's a very good starting point on your journey to learn more about you. 
    Well done on stopping the drinking, I know how hard that can be.
    Scope
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  • tru88letru88le Member - under moderation Posts: 91 Courageous
    At your age your still quite young, not drinking and free of your neglectful mother at last, see it as a new start where you will get answdrs to the yhings you were denied kniwing about through your mum.
    Good luck stay positive and please keep us ul to date with hiw you get on if you dont mind that is :-)
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  • MISSIEEEMISSIEEE Member Posts: 11 Listener
    edited November 2020
    Hi Thankyou for all replies, bits of confusion so the best way I can explain this is to post 2 pics. I’m afraid you have to zoom in as I’m not too good at this 😂     Btw. Had my eeg today and I have mri on 12th

    <moderator removed images as contained personal identifiable information>
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  • Cher_ScopeCher_Scope Community Team Posts: 2,424 Disability Gamechanger
    Hello @MISSIEEE

    How did your EEG go?  I hope it went well and you are feeling good today.

    I've removed the pictures you uploaded as they contained your name and some personal details which might have compromised your privacy.  I hope you understand, our aim is to keep you safe online :)

    Please let us know if we can help you in any other way and roll on that MRI so you can hopefully get some answers.  
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  • Tori_ScopeTori_Scope Community Team Posts: 2,747 Disability Gamechanger
    Welcome to the community @MISSIEEE! How are you getting on today? 
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  • Ross_ScopeRoss_Scope Community Team Posts: 2,013 Pioneering
    Hello @MISSIEEE and welcome to the community :) 
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  • MISSIEEEMISSIEEE Member Posts: 11 Listener
    I posted 2 pics. One with my spinabifida medical details and the other is the neuro side of things which gives details of the examination, she also states that she thinks my doctors prognosis of having bells palsy is wrong and basically the possibility of being born with cerebral palsy too, I understand they had to be removed. The eeg was ok, I won’t know about that yet, it’s the MRI That’s finally almost here. I know the answer because I’ve lived with “me” for 52 years. Thankyou all for listening and I can’t wait 😊 
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  • MISSIEEEMISSIEEE Member Posts: 11 Listener
    Thankyou and will keep you posted xCher_Scope said:
    Hello @MISSIEEE

    How did your EEG go?  I hope it went well and you are feeling good today.

    I've removed the pictures you uploaded as they contained your name and some personal details which might have compromised your privacy.  I hope you understand, our aim is to keep you safe online :)

    Please let us know if we can help you in any other way and roll on that MRI so you can hopefully get some answers.  

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  • Tori_ScopeTori_Scope Community Team Posts: 2,747 Disability Gamechanger
    Thanks for summarising the content of the photos @MISSIEEE, that's really helpful :) I'm glad the EEG was okay, and I hope that the MRI goes well. Please do keep us updated. 
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  • chiariedschiarieds Community champion Posts: 6,292 Disability Gamechanger
    Thank you for your update @MISSIEEE - I'm pleased the EEG was OK, & not too long now until your MRI. I'm sure you hope to get some answers after all this time, but, as you say, you have a great understanding as you're the one that has been living with this. Hope to hear again from you soon. :)
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  • MISSIEEEMISSIEEE Member Posts: 11 Listener
    Hi everyone, hope this finds you all well and safe. I have a question , if the scan does say I’m cerebral palsy as well as spinabifida, are these two linked? And is it common to have both ? 
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  • chiariedschiarieds Community champion Posts: 6,292 Disability Gamechanger
    Hi @MISSIEEE - as far as I'm aware there's no known link between having cerebral palsy & spina bifida; that's not to say that a person might not have both conditions as Richard mentioned. So, no, uncommon to have both.
    Your mention of Bell's palsy is also a bit of an odd one, as this usually affects one side of the face, & wouldn't be anything like cerebral palsy.
    Hopefully you'll find out more when you have your MRI, & discuss the findings with your specialists.
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  • MISSIEEEMISSIEEE Member Posts: 11 Listener
    Hi and thanks for replying, the Bell’s palsy part is what the doctors thought but the neurologist after examination over ruled that . Hope Everyone is well and keeping safe 
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  • chiariedschiarieds Community champion Posts: 6,292 Disability Gamechanger
    Pleased the neurologist ruled Bell's palsy out; that had me puzzled. Not too long now until your MRI which hopefully might explain things better for you. Please let us know how you get on. :)
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  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,701 Scope community team
    edited December 2020
    I hope the MRI gives you the answers you're looking for @MISSIEEE. Not much longer left to wait now. :)
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  • MISSIEEEMISSIEEE Member Posts: 11 Listener
    Adrian_Scope said:
    I hope the MRI gives you the answers you're looking for @MISSIEEE. Not much longer left to wait now. :)
    Thankyou very much, this Saturday!  I don’t know if I mentioned but I’m having full spine scan as well as brain. It’s all happening. 😊 
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  • Ross_ScopeRoss_Scope Community Team Posts: 2,013 Pioneering
    It certainly is all happening @MISSIEEE, I hope it all goes well :) 

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  • janer1967janer1967 Community champion Posts: 6,175 Disability Gamechanger
    Hope it all goes well fingers crossed for you
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  • MISSIEEEMISSIEEE Member Posts: 11 Listener
    I hope u guys don’t mind me saying but it’s only this Saturday after all this time. I know I’ve said I’m excited but now it’s 2 days away I’m scared, and nothing usually phases me but scared 😟 😂 
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  • chiariedschiarieds Community champion Posts: 6,292 Disability Gamechanger
    Hi @MISSIEEE - I'm sure your excitement at eventually finding out more is tinged with nervousness, which is totally understandable. An MRI is fine; I've had 3 full brain & spine scans trying to confirm my problems. The technicians are great, & will put you at your ease, & it doesn't take too long. A neuroradiologist will need to read your scans & send a report to your specialist, so you will need to be patient a little longer. I hope you will then get some answers. You're on the right path to getting there. My best wishes. :)
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  • Tori_ScopeTori_Scope Community Team Posts: 2,747 Disability Gamechanger
    Very best of luck with it @MISSIEEE :) Try and take your mind off of it for now. Let us know how it goes! 
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  • MISSIEEEMISSIEEE Member Posts: 11 Listener
    Thankyou , will they let me know anything tomorrow or do I have to wait? and If so does anyone roughly know how long? I know they will fill me in on what where and when , it’s just every minute now it’s tomorrow feels awful x
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  • Tori_ScopeTori_Scope Community Team Posts: 2,747 Disability Gamechanger
    As @chiarieds suggested, you might have to wait a little bit until the specialists have interpreted your scans. I don't know how long this would take, but it's something you can ask them on the day. They might not be able to give you an exact timeframe, but hopefully they'll be able to put your mind at ease a bit. 

    Are you able to do anything tonight to distract yourself? Perhaps you could chat to a friend, watch some TV, listen to some music, or read a good book? Of course, you're also more than welcome to get stuck in with chatting to people on here! 
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  • MISSIEEEMISSIEEE Member Posts: 11 Listener
    Humpback whales 🐋 And Thankyou 
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  • MISSIEEEMISSIEEE Member Posts: 11 Listener
    Hi hope this finds everyone safe n well. Had my mri yesterday, wasn’t too bad, was in there about a hour and will k ow between 2/6 weeks . Thankyou for all your help and advice.
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  • chiariedschiarieds Community champion Posts: 6,292 Disability Gamechanger
    Pleased that's over & done with now @MISSIEEE - I hope you can relax a little now. Thank you for the update, & that you don't have too long to hopefully find out more. Please do let us all know how you get on, thank you. :)
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  • Ross_ScopeRoss_Scope Community Team Posts: 2,013 Pioneering
    Thanks for the update @MISSIEEE, I'm glad it wasn't too bad. I'm sure the result will be with you before you know it, hopefully you can relax in the meantime and enjoy your Christmas.
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