Am I expecting too much...?

[imscaredd]

Okay so I had a seizure out of the blue a few weeks ago, and ever since I keep getting "funny turns" which feel very similar to before the seizure happened.

My head feels like it's getting zapped, I twitch, can't talk and feel distressed and absolutely terrified. This is currently happening every day and I can't enjoy life.

I had an appointment with a neurologist and basically I have to wait another few months for tests etc.

AIBU to expect this to be taken a little more serious/treated with a bit of urgency?

I'm currently crying as I type this, and feel like I can't live the same. I'm utterly terrified and nobody seems to be helping

Hi there! I have a similar issue with the NHS, for a serious condition, but much less serious than yours. After trying and failing to deal with a lot of frustration I happened to get chatting to somebody who worked at one of our local hospitals and their advice was to get in touch with the Patient Advice and Liaison Service. I think they are advocates for patients. I have found them
Very helpful. Good luck!

@SnookieSnooks any condition is serious when it's affecting your life so I'm really sorry to hear you're going through something too.

Thank you so much for that - I will try and contact them tomorrow. I feel like even a little bit of hope that it may end soon would help at this point.

Thank you

That’s shocking! Do you know the name of the neurologist that you are waiting to see? I had to wait a long time to see a consultant when I was in pain with kidney stones. I found out who I was going to see, went on the hospital website and found out the name of his secretary. I then called her number and literally cried down the phone, begging for her help. She managed to squeeze me in to see him a few days later.
It’s bad that I had to do that to be taken seriously and seen but sometimes it’s those who shout the loudest...

@Ansumpasty I do and I have an email address - should I email? I seem to articulate myself better that way.. hmm

I'm so sorry you went through that that is horrendous

@Ansumpasty I had to contact the Patient Advice and Liaison Service because my consultant’s secretary won’t answer questions, even from my GP . Communicating with her is pretty much like trying to talk to a brick wall.

However, his previous secretary was absolutely brilliant. I phoned her once with a question and 10 minutes later, the consultant was on the phone to me!

@imscaredd pluck up your courage and phone. These people get 100s of emails each day. If she’s not there leave a voicemail and follow up with an email.

The NHS has no money. Everybody has to wait. Unless fewer people use it/it is better funded the waits will just keep getting longer. If you can afford it have the tests done privately.

Ended up phoning today and was told I'd get a phone back..never did

Sorry OP, it sounds scary for you to be left without knowing what's going on for so long. Was it PALS you phoned?

Keep pestering imscaredd. Sometimes those that shout loudest....and all that!

Phoned PALS and the receptionist for the specialist :( I am so so upset it's the scariest feeling in the world and I'm just terrified it's a brain tumour or something but surely I'd know if it was wouldn't I? 😭 I'm only 24

Wait and see what tomorrow brings OP x hugs

Thank you all you've really helped keep me sane to be honest.

Doctor phoned back but nothing they can do until the tests and they don't know how long the tests will be