MS and ME — Scope | Disability forum
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MS and ME

riversong234
riversong234 Community member Posts: 12 Listener
Hi 

I am trying to find out whats wrong with me as the NHS seem to have given up. I find that sometimes a list of symptoms is unhelpful but when people decribe there experiences it's easier to work out if that's my experience to. 

Would someone be kind enough to tell me what it's like to have MS or ME or link me to a good video on the topic?

Thanks 

Alex 

Comments

  • Hannah_Scope
    Hannah_Scope Posts: 7,093 Disability Gamechanger
    edited July 2023
    Hello @riversong234

    Welcome to the community! :) I'm sorry to hear that you feel the NHS has given up. Can I ask, have you been referred to a consultant regarding MS or ME?

    If you are after more information, the MS Society has some great information pages and ME Research UK have many discussions on their social media pages you may find helpful :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • WelshBlue
    WelshBlue Community member Posts: 703 Pioneering
    As someone who's daughter was diagnosed with MS 2 years ago at the tender age of 23, I personally would be wary of going by symptoms alone as they can be mistaken for other things ... we were hoping on hope that it was Fibromyalgia because her symptoms were mimicking mine for example despite the MRi showing lesions

    The only definitive answer my daughter got was after a lumbar puncture

    Her symptoms can vary, with her RRMS so I wouldn't feel comfortable scaring anyone on a forum

    As Hannah says a Consultant is best to see.  Neurologist is needed for the MS and a Rheumatologist or Neurologist for the ME.  They get paid the big bucks

    As far as I know there is no test as such for ME ... just your medical history and symptoms.

    If by giving up on the NHS is down to your experience with a GP, can you see another to request further tests/ scans and a referral.  Or have they exhausted all avenues and you have no diagnosis ?

Brightness

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