Finally got a full diagnosis

sparkleapril
sparkleapril Online Community Member Posts: 82 Connected

Finally got a full diagnosis from my neurologist, I feel relieved but still got a long way to go and still get use to my adapted life.

The doctors last year wasn't listening putting it down to mental health, it's been so frustrating to get them to listen. But now I can get the right help.

Hemiplegic migraines

Function neurological disorder

Non epileptic attacks

My left side of my brain doesn't work properly and sends off the wrong signals

Comments

  • Sandy_123
    Sandy_123 Scope Member Posts: 59,512 Championing

    HI @sparkleapril glad you got a diagnosis and can now get the right help and support

  • sparkleapril
    sparkleapril Online Community Member Posts: 82 Connected

    Thank you @Sandy_123

  • Cantilip
    Cantilip Online Community Member Posts: 623 Empowering

    Brilliant. Have they said yet what they can do to help now they know what's wrong?

  • Jimm_Scope
    Jimm_Scope Posts: 5,409 Scope Online Community Specialist

    I'm glad you finally have some answers @sparkleapril! I hope they manage to sort out help soon. Have they given any indication of what can be done yet or is it still a bit early?

  • sparkleapril
    sparkleapril Online Community Member Posts: 82 Connected

    They are going to start me on mirgaine medication after had baby.

    I need to see a specialist about hemepic migraines but they havent sorted that yet.

    Referred me to specialists for physio to see how much mobility I can get back, and will refer me to other specialists if needed. The physio I was having was causing more sezuires so they have referred me to the right team now. To help with function neurological disorder.

    On the waiting list for CBT therapy but that's been over a year so been doing that myself with my work books.

    I haven't had a seizure for 3 months but I still suffer with tremors, my legs lock in I try and walk and I have no balance I fall backwards or go into a sezuire. That's why I am in a wheelchair.

    My face drops when I get tired or I start to speak slow or I lose my voice.

    My left side of my body feels weak.

    Certain foods cause migraine and sezuires.

    Certain lights cause migraine and sezuires.

    Certain sounds cause migraine and sezuires.

    Anxiety and stress, trauma can cause migraine and sezuires.

    So there is alot to work on but the migraine medication will help alot I think cause every time the migraine it causes sezuires and sets my body back.

    My condition won't go away it's just learning to adapt to a new me.

    Just relived that now they can't turn me away. And say it's mental health and all in my head. They was trying to force me last year to get out the wheelchair and told me to walk when I physically couldn't.

    @Cantilip @Jimm_Scope

  • sparkleapril
    sparkleapril Online Community Member Posts: 82 Connected

    They are waiting till after I have my baby then start helping. @Jimm_Scope

  • sparkleapril
    sparkleapril Online Community Member Posts: 82 Connected

    I suffer with function neurological disorder as well as Hemiplegic migraines and non epileptic attacks so got 3 conditions on top of each other

  • Rachel_Scope
    Rachel_Scope Posts: 1,656 Scope Online Community Coordinator

    That's such great news @sparkleapril! I'm so happy for you 😊 It's the start of a brighter future for you. Plus you'll have a lovely, new baby! So exciting.

  • sparkleapril
    sparkleapril Online Community Member Posts: 82 Connected

    Thank you @Rachel_Scope

    And yes not long I am over 35 weeks now but I have asked if they will induce me cause I am GB step

  • sparkleapril
    sparkleapril Online Community Member Posts: 82 Connected

    They said around about 39 weeks they will induce me

  • Rachel_Scope
    Rachel_Scope Posts: 1,656 Scope Online Community Coordinator

    So exciting that you don't have long to wait! I hadn't actually heard of GB Strep so I've learned something there. I hope everything goes well for you, looking forward to a baby update ❤️