Just so fed up — Scope | Disability forum
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Just so fed up

diane01
diane01 Community member Posts: 45 Connected
Living in pure hell & want a diagnosis on my health condition now missed xmas new yr & mothers day because i'm so ill everyday i'm getting worse symptoms with it & i'm not strong enough to carry on like this effecting my everyday life bed bound h8t being in my body & now lossing the will to care!

Comments

  • Tori_Scope
    Tori_Scope Scope Posts: 12,491 Disability Gamechanger
    edited March 2021
    Hi @diane01 :) 

    I'm sorry to hear your symptoms are still getting worse. Is this in terms of your FND, or are the symptoms of your menopause becoming worse? Or is it something else?
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  • diane01
    diane01 Community member Posts: 45 Connected
    I dont kno because it was the dr that said i had fnd but waiting on neurologist my symptoms each day r getting worse but i just want to kno whats going on with myself trying so hard just to get thru the days now honestly my dr says he has done all he can because he's referred me but just wanting to feel normal instead in pain & continuous shaking tremors all over my body & my brain just feels odd again also very weak & fatigued couldnt get out of bed even if my legs & body wasnt shaking really just fed up ov feeling so ill my energy levels are on 0 mode & feeling tired again only been up 4 hours & i need to sleep again now!...sleeping more than i'm awake these days! 



  • Tori_Scope
    Tori_Scope Scope Posts: 12,491 Disability Gamechanger
    I see @diane01. It must be frustrating not having a confirmed diagnosis. 

    Could you possibly speak to a different GP at your surgery? Perhaps they'd be more understanding, or help you to look into other options in the meantime? 

    Do you mind me asking what you mean when you say your brain feels 'odd'?
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  • diane01
    diane01 Community member Posts: 45 Connected
    Feels like there is something blocking me having happy hormones feels odd never had headache b4 then started off with headaches i just couldnt cry at one point then i couldnt feel anything emotionally ano it sounds strange i didnt feel like the same person but i knew there was summat up with me b4 i started off with all these health issues it had all started after taking beta blockers for some pins & needles in my feet then i come off them as was they was making me sedated  my brain just went odd i had odd behaviour & my eye sight went so blurred & like i said no emotions after that all hell broke loose started jerking twitches spasms & leg arms shaking & sensations all day long in my legs unable to do a simple task  headaches still coming daily & feeling so unsteady on my feet & now fatigue think the worse thing is feeling all this in on day reason i cry because its not knowning how to cope or handle it & not knowing wots going on when my brain feels so odd just want one happy hormone to handle it
    Drs just says well i've referred u now to neurologist like its not effecting my daily   
  • woodbine
    woodbine Community member Posts: 11,607 Disability Gamechanger
    I'm no expert and we don't give medical advice as such on here for obvious reasons but it sounds like refering you to a neurologist is your GP doing the right thing, all I can suggest is that you contact your GP's surgery and ask who he has refered you to and then chase them up to find out when you can expect to be seen.
    Hope you get sorted asap
    2024 The year of the general election...the time for change is coming 💡

  • diane01
    diane01 Community member Posts: 45 Connected
    Thanks Ano it wasnt ment to come across like i was asking for medical advice on here seen loads of post of other people giving there details of what there are going thru on a daily basis so just explaining my experience of it all & how its effecting me & yh i hope so to as i'm really not coping with any ov these health issues ?
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    Hi @diane01 Aw I'm sorry to hear things aren't any better and it's understandable that you are feeling overwhelmed.  I hope the neurologist will be able to give you some answers as to what's happening and any treatment options available.  It's definitely worth chasing your appointment as @woodbine suggested and one option other than the GP would be to ring the neurology secretaries to enquire if they'd had any cancellations and emphasise your need to be seen. 

    Also, have you spoke with your GP recently about the impact this is having on your mood?  If not that's something to consider, as I know personally I find the waiting period to see a specific consultant/service stressful :(
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  • diane01
    diane01 Community member Posts: 45 Connected
    @Cher_Scope Tell me about it i have 3 appointments that i've been chasing up for months now & just feels like going crazy with it all yh i phone neurologist she just said if someone cancels it goes to the next person on there list which is understandable but just feels so much of a wait for me 10 wks seems ages when feeling so rough 
    Dunno where to start with my gp told her today this fatigued i've got is getting out of hand & she's like it'l be menopause 
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    @diane01 Ah, fingers crossed a cancellation crops up so you can be seen sooner.  The menopause can cause allsorts of unpleasant symptoms can't it?  And I'm sorry to hear it's making you fatigued.  This Menopause Support website has lots of helpful resources about coping and remember to do what your body says, and if you need to rest then rest :) 

    If any of your symptoms suddenly worsen then please seek urgent medical attention but in the mean-time our community is here whenever you want to talk.  Take care  <3
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  • diane01
    diane01 Community member Posts: 45 Connected
    @Cher_Scope so annoyed rang up neurologist today they said its 20 wks waiting list so looks like july b4 i can see anyone how do i cope with waiting its been driving me crazy just waiting & be wanting answers since dec i'l have no job by then :( & to leave me bed bound sickened by the new devastated  
  • woodbine
    woodbine Community member Posts: 11,607 Disability Gamechanger
    Sorry to hear that @diane01 it does seem like a long wait but it's a bout the usual for "non urgent" referals, although i'm sure to you its urgent as @Cher_Scope rightly says if anything suddenly worsens then seek immediate help.
    2024 The year of the general election...the time for change is coming 💡

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