Hi, my name is atomicnibs!

atomicnibs
atomicnibs Community Member Posts: 2 Listener
in Start here and say hello

I have a.s borderline autism and now diagnosis with chiari malformation they type is unknown am still having more tests but having a mental disability for since a child and then now more physical one is talking its tole am also lactose intolerant which is a disability but doesn't help me but find out I was born with chiari malformation but waiting dormant till I become an adult is also disturbing my head hurts all the time and my head is mess so come to find support or those that have or know or in the know and understand and also feel rejected

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  • durhamjaide2001
    durhamjaide2001 Scope Member Posts: 15,450 Championing

    hi there and welcome to the forum unfortunately the system isn't good at speeding things up in the UK. CAMBS can be a disgrace it took me 8 years to get my diagnosis. I would recommend going private if you can afford it.


    I would also recommend that you have a look at the coffee lounge for a general chat and the games den for some fun.

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  • Albus_Alumni
    Albus_Alumni Scope alumni Posts: 11,373 Championing

    Hey there @atomicnibs and it's a warm welcome from me too.

    I'm so sorry to hear you've been struggling, we're all here for support when you need us. We have a few people here who would be great for you to talk to, including the font of knowledge for all things EDS, known as @chiarieds 😊

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  • chiarieds
    chiarieds Community Member Posts: 17,362 Championing

    Hi @atomicnibs - & welcome to the community from me too. Thank you for the tag @Albus_Scope 😊

    I found out that my family & I all have Ehlers-Danlos Syndrome (EDS) which is a genetic disorder; my youngest granddaughter has just been diagnosed with EDS. Then I found out that Chiari 1 Malformation can be associated in some with EDS so we have 2 disorders that have been found out to be linked.

    Chiari Malformation can affect everyone differently, & I don't have the characteristic headaches but do have neuropathic pain the moment I'm upright. I'm sorry to read you have the headaches which I know can be unrelenting. Does your GP have an understanding about Chiari Malformation? I wonder if he can refer you to see a neurosurgeon to see what they think & how Chiari Malformation is affecting your life.

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  • atomicnibs
    atomicnibs Community Member Posts: 2 Listener

    Its not GP that comes know diagnosis its well neurologicalist i am waiting eeg and neuro surgery ap as and eye surgeon due c.m I also strabismus also csa and insomnia which is extremely stressful also have depth perception issues to

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