Discouraged about getting seen.

alienkitties
alienkitties Community Member Posts: 3 Listener
in Talk about your impairment
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. 

Comments

  • Albus_Alumni
    Albus_Alumni Scope alumni Posts: 11,423 Championing
    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. 
  • alienkitties
    alienkitties Community Member Posts: 3 Listener
    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! 
  • Jimm_Alumni
    Jimm_Alumni Scope alumni Posts: 5,713 Championing
    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 :)
  • jane52
    jane52 Community Member Posts: 84 Contributor
    Have you checked out the organisation Smart Patients as they will have knowledge of USA
    Good luck in your search

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