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Hospital

haribella1216
haribella1216 Community member Posts: 17 Listener
in Disability rights and campaigning
Well that,was an eventful afternoon. For the past year and half I have been taking medication for parkinsons as was diagnosed with it. After todays visit the pd specialist says " I do not have pd and he doesn't know what's wrong with me as he is not a neurologist just a pd specialist". So that's all that time taking medication which made me feel awful for nothing. Now I don't know what will happen apart from appointment to go back to an actual neurologist. Has anyone else been misdiagnosed woth anything and what happened 
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Comments

  • Sandy_123
    Sandy_123 Scope Member Posts: 33,142 Disability Gamechanger
    Goodness that's not good is it. I wonder if things will improve with out the meds
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  • haribella1216
    haribella1216 Community member Posts: 17 Listener
    I don't believe it will as before taking them it was awful and they calmed the tremors etc 
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  • Sandy_123
    Sandy_123 Scope Member Posts: 33,142 Disability Gamechanger
    Hmm I would go back to gp for further tests  I would also look at complaints for misdiagnosis 
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  • haribella1216
    haribella1216 Community member Posts: 17 Listener
    The neurologist first diagnosed then went to pd specialist and he agreed with diagnosis to then visit 6 times later to be told he believes it isn't and that it is something else but doesn't know and told me to see neurologist. Backwards and forwards again 
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  • haribella1216
    haribella1216 Community member Posts: 17 Listener
    From what pd specialist said today I'm being referred back to original neurologist.  Just see what they come up with now . 
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  • haribella1216
    haribella1216 Community member Posts: 17 Listener
    Thank you
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    You are welcome @haribella1216. It is the very least you deserve.

    Please don't hesitate to let us know if we can do anything else to support you. We are all here for you and listening to you  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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  • Cartini
    Cartini Community member Posts: 1,108 Pioneering
    Sandy_123 said:
    Hmm I would go back to gp for further tests  I would also look at complaints for misdiagnosis 
    I have a friend who is being investigated for Parkinsons Disease - the process is long and involves different types of medication to ensure it is, or is not, Parkinsons.
    Initially they thought she had bad essential tremors, but that`s been crossed out.
    The investigations are showing that it most likely isn`t MSA so her medication (lepadova) has been increased.
    On that point, I would say complaining about a percieved misdiagnosis is not called for. 

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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    That sounds really difficult and lengthy @Cartini. How are you coping with it at the moment?

    Hopefully, they will find out soon and be able to approach it accordingly. Understandably, we all respond differently during the diagnosis/misdiagnosis process  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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  • haribella1216
    haribella1216 Community member Posts: 17 Listener
    I have now reached the point of it is what it is. Spoke to gp and they said start taking the rasagiline again if it calms the symptoms. Now it's just a wait to see a neurologist again also I have asked for a second opinion. Thank you all for your words 
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