Discouraged about getting seen. — Scope | Disability forum
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Discouraged about getting seen.

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alienkitties
alienkitties Community member Posts: 3 Listener
in Physical and neurological impairments
I am not sure where to post. But I don’t know what to do about this and am wondering if anyone has any advice. 

I have been seen now by 8 different neurologists. The last, was a Movement Specialist who diagnosed me with FND and is forwarding me on to a Functional Neurologist. But it has been almost 2 months and I STILL have not even received a phone call to SET UP the next appointment for the FN doctor. 

My symptoms include paralysis and severe muscle spasms. I am losing my ability to walk and talk. And am in a great amount of pain. I am so discouraged. And so frustrated. I have called multiple times and still nothing. 

How do I find another specialist. I don’t see any!??? And when I try looking through search I am not finding them. The one I can see on a list is my regular neurologist and she doesn’t know anything about FND. 

What am i supposed to do to get seen!??? This is so frustrating. And confusing to me. 

(I live in Kansas. US)

i appreciate any advice. Thank you. 
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  • Albus_Scope
    Albus_Scope Posts: 4,322 Scope online community team
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    Hey @alienkitties (loving that name!) and welcome to the community.

    I'm so sorry to hear you've been unable to get that call, I get that must be very frustrating!  We're a UK based charity, so unfortunately my knowledge is limited when it comes to USA things, my apologies.  I'm hoping one of our regulars may know a bit more. 
    Albus (he/him)

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    Neurodivergent.
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  • MW123
    MW123 Scope Member Posts: 478 Pioneering
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    @alienkitties

    I'm not familiar with how healthcare works in America. Have you thought about contacting one of the neurologists you've already visited? They might be able to help you or point you in the direction of someone who can.  Your symptoms sound really tough, so I hope you can get the assistance you need as soon as possible.  Take care x
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  • alienkitties
    alienkitties Community member Posts: 3 Listener
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    Thank you for your thoughts. I haven’t considered asking “backwards”. It has been a battle so far and I don’t feel supported by the ones I’ve already seen. But I don’t have a lot of options where I’m at either. However, that doesn’t mean I stop trying. I will reach back to one of them and see what she says. I appreciate it! 
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  • woodbine
    woodbine Community member Posts: 11,669 Disability Gamechanger
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    As this is a UK forum we have no idea about how the US health provision works (or doesn't), sorry 
    2024 The year of the general election...the time for change is coming 💡

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  • noman
    noman Community member Posts: 565 Pioneering
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    woodbine said:
    As this is a UK forum we have no idea about how the US health provision works (or doesn't), sorry 
    Just because you have no idea doesn't mean the whole community has no idea!


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  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
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    Hey @alienkitties, does the hospital or clinic your latest neurologist was at have a complaints or customer relations department at all? It might be worth checking in with them to see if they can get something moving.

    I also don't know much about the US healthcare system, but my partner is American so if I get stuck I can ask her for some ideas :)
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
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  • jane52
    jane52 Community member Posts: 35 Courageous
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    Have you checked out the organisation Smart Patients as they will have knowledge of USA
    Good luck in your search
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