Getting a diagnosis

Livelove0x
Livelove0x Online Community Member Posts: 1 Listener
in Rare, invisible, and undiagnosed conditions
Hello to all of you here, I’m here because I’m struggling terribly right now with getting doctors to take me seriously. I’m 29 female and I’m having a lot of symptoms of motor neurone disease, I’ve done much research and am almost certain I could have this. My symptoms started in may 2021 after a hospital stay (had many different drugs during my stay) my symptoms as of now are muscle twitching all over, vibrations, muscle loss in most of my body, tongue atrophy, cramping and stiffness. I had an EMG in September 2021 which only picked up twitching and an EMG January 2022 which had some polyphasic potentials in my tongue and ankle and with some AMP in ankle, all I’m being told is I have anxiety and to go away and relax basically, I’m deteriorating quickly, I’m scared to call my doctor as I’ll be told I’m just anxious, I have pictures to show the muscle loss I’ve had in 9 months. Does anyone have any advice on getting a proper diagnosis I feel so lost right now, Thankyou so much for reading 

Comments

  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,611 Championing
    Hello @Livelove0x

    Welcome to the community, and thank you for telling us about what you have been through. I'm sorry that you feel as though you haven't received the right support, but I'm glad that you've found us because this is a very supportive and welcoming place.

    How many doctors have you spoken to about this? One thing I would suggest is that you could speak with a new GP to see if you can get anywhere with them if you aren't happy with your current treatment. Additionally, you could get in touch with an organisation like MND Support to see if they can provide some more professional advice for your specific situation.

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