Hi,
Is it normal to very rarely actually speak to your neurologist? i was diagnosed over the phone in april and was supposed to have a telephone appt with my neurologist last week but the epilpsy nurse took it instead - not sure why. i’m just feeling frustrated as i’ve not even been able to sit face to face with a doctor and discuss my seizures that have still been going on, is this normal? does anyone else very rarely get to speak to a neurologist ? thank you!
I haven't seen my neurologist in person since 2019. All my apps are phone apps now. Was told by his secretary that he only sees face to face if condition has changed. Surely you should have seen him at least once since diagnosis? To check you over etc. Baseline checks? You could ring his secretary and ask to see him? Considering you never have. Or see if the epilepsy nurse can be of any help?
Good luck
Once you have your meds and dosage sorted out you should be ok with yearly appointments. But if you’re having concerns please request a face to face appointment, or look for a new more understanding neurologist. I’ve always seen my Neurologist in person as these symptoms can’t be relayed over a phone appointment.
Yes same here, my former neurologist and his nurse, became good friends for years, I have JME Epilepsy, [over 50 years 400 + seizures] I saw him regularly for years, every six months, then he had a bad seizure himself in 2013 had to stop his job, BUT I did not get a 'replacement' for three years, then I found they had lost his notes going back 25 years, so in 2016, "What sort of epilepsy do you have?" met me, a new neurologist😤😤 Unfortunately what neurologists they have, are under dark suspicion presently, here in Northern Ireland. Hope you have better luck yourself👍, it's not the workers it the 'system', worst in UK, it stinks🤮
I'm in NI also. I had my 1st seizure in Sept 2020 & was told I'd be put on waiting list for an outpatient neurology appointment. Eventually, in Sept 2021 I saw a neurologist privately (and even then had to wait 4 months for the appointment) as in April 2021 I'd been told the NHS waiting list for urgent neurology cases in NI was 3 years and for non-urgent/routine cases, like mine, it was "4, or more likely 5, years!"
They must've got money from somewhere to tackle the backlog because I did in the end get an NHS appointment in September 2022, held in a fancy new building called the Ballymena Health and Care Centre on the Cushendall Road, Ballymena. The neurologist I saw there said I'd get a review appointment every year........and it might be a telephone appointment........but it's now November over a year later and I haven't had any news of a review appointment. Do you think I should be asking for one?
I know there were problems (it was on the BBC news) about the work of a neurologist called Watt whose patients had to be recalled, and who was considered by the GMC not to be fit to practise any more, but you seem to be implying that there are problems with other NI neurologists?
It was my particular neurologist was sick and they did not replace him, in City hospital Belfast, his records going back to 1970's were lost, in that time I developed 'shaky hands' from long term Epilim usage.
A double seizure in Jan 2018 broken skull, was not diagnosed until July 2021, but that was directly due to incompetence and malpractice of Lagan Valley Hospital, Lisburn, am now officially diagnosed as terminal.
I have a neurologist in Royal Hospital, Belfast, but we agreed nothing more, other than to stay on present medication, due to my terminal condition, she seems perfectly competent.
There was a local epilepsy support group, where I met a couple of patients of Watt, not exactly glowing reports about him!
Yes, a friend had seen Watt and his case had to be reviewed: a very stressful experience. Sorry to hear about your terminal condition. Hope you'll be able to continue to get the help you need.
Hi. I haven't seen my neurologist since I was diagnosed in 2019 and have yearly appointments with the epilepsy nurse who then discusses any changes with the neurologist. If you're responding well to the medication then that's why. If their are any changes then ring the nurse and she will decide whether you need to see the neurologist. Hope this helps.
Hi, yes , I'm afraid so. My son's EEG showed on one attempt in April that he has underlying tonic clonic seizure disorder . I didn't receive this report until my Son's Doctor had to request it from the Neurology Department and was unaware of its existence until September. In August my son who can only say keywords said"I don't want to die" he is non verbal and I realised something was very wrong. My son was diagnosed in September after I chased his appointment and was told it was 'sent back' , a lot of confusion, speaking with line Managers then we had to settle for an appointment over the phone. He was unable to witness my son's focal seizures and I would like to know how my son wasn't diagnosed and left with seizures and headaches for 6 months . I wrongly assumed my son's EEG was clear ..not so..based in Wales. UK.
I've gone over a year without speaking to mine just the epilepsy nurse I think it is norma John
I hadn't seen my neurologist face to face for 3 years, then in August 2023 I got an appointment. All other consultations have been done over the phone.
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