In UK have been sent an appointment to epilepsy clinic?

[Louless9]

I spoke to my GP who has referred me to a neurologist.

I’m in Oxford, UK.

I have been sent to the neuroscience dept, and a doctors epilepsy clinic.

Has anyone else been to Oxford JR Hospital?

Im guessing they don’t know where to send me as there is no expert in this field?

The appointment is 6 months away.

[SueJohnson]

Epilepsy Clinic. That doesn't make sense. See healthunlocked.com/rlsuk/po... You might want to message him to find out his son's name.

[SueJohnson]

Oxford is not that far away from London. You might want to travel there where there are experts. Oxford is a lovely town by the way. I am from the US but have been there.

[Joolsg]

There are no neurologists in the UK who specialise in RLS. Most neurologists we see are specialists in other neurological diseases. The average NHS waiting list for a neurologist is currently 12 -15months so 6 months is actually good!Did your GP do full blood tests as per NHS guidance? Did they suggest any meds? Did they discuss existing meds you're currently taking to ensure they aren't triggers?

[Louless9 in reply to Joolsg]

The GP knew nothing. I asked about another ferritin blood test ( last one 2017 was 40) but she said I wasn’t anaemic and we only had so much blood to give? She confirmed that I was on the top dose of medication and not to take anymore. She seemed more interested in the stress I had suffered last Xmas but things have settled down. She was googling the whole time. So apart from me taking ferrous sulphate 200mg tablets that was the only change.

[Joolsg in reply to Louless9]

Think the GP is confused. We need IV iron infusions, not blood infusions.I wrote directly to St George's and sent research papers. They gave me an iron infusion. Unfortunately, I'm one of the 20% for whom it doesn't work. Write directly to the nearest hospital haematology department. In the meantime, raise your serum ferritin by taking ferrous bisglycinate every other night.

What meds are you taking at highest dose? Ropinirole or Pramipexole ? If so, you can start reducing slowly yourself.

[67Waterman]

Hiya. I was referred to Professor Walker, who is supposed to be an RLS specialist, at the Queen Square Neurology Hospital .... and he resides in the "Epilepsy Centre". I think you may find it is just the terminology of the grouping where RLS sits. But definitely find out who you are going to see and Google whether they are RLS specialists!

[Louless9 in reply to 67Waterman]

Thank you, that puts my mind at rest

[Louless9]

I didn’t have a choice of where to go unfortunately

[Kaarina Administrator]

Hi Louless9, hopefully you are being referred to the Sleep Clinic at the JR hospital which helps patients suffering with RLS and PLMD. ouh.nhs.uk/services/referra...

[Louless9 in reply to Kaarina]

I had no idea there was a sleep clinic at the JR, thank you for that information.