I was referred as ‘urgent’ to neurology in early March. I received a letter within days of the referral to say that there were no available appointments at the chosen hospital, so other hospitals in the group were being looked at. The letter did say if there was a deterioration in symptoms then to go back to referring doctor.
I have since been diagnosed with trigeminal neuralgia, the doctor asked if I had an appointment yet and when I said no, said make sure you mention it when you see the neurologist.
Just wondered what waiting times, from point of referral to appointment, anyone else is experiencing.
Hi, Boud, thank you for the reply I’m not surprised. I have just been looking at waiting list in various regions, if to be believed I’ve exceeded some and have a long wait for others… private now there is a consideration .
Hi GCCK, urgent now means ‘several months’, gosh. I have had symptoms for over 14 years but over the last year the symptoms have become more worrying. I don’t mind waiting, well I do really. I have had some scary symptoms to the point I thought I was having a heart attack and ended up in A & E. This symptom hasn’t gone away, as hasn’t the right sided weakness …. which in part is why the doctor has referred me. Guess I will have to wait it out.
I’m like you - and a surprising number of others - in that I carried around my MS for years, undiagnosed and in ignorance. For me, it was 8 or 9 years, misdiagnosed as something else, something that could eventually be “fixed” with an unpleasant operation.
Trouble is, in the absence of a MS diagnosis, symptoms can be pretty advanced before some bright spark says “hang on, I’m not sure about that other diagnosis you were given years ago” and of course, there’s no rewind button.
Quite life-changing to discover that there is no fix and right now is as good as I’m going to be. The MS Doctors, more used to dealing with the 85% of slow-burn RRMS over decades, don’t seem to understand that a newly-diagnosed yet advanced Progressive MS patient wants to make up for lost time. Sadly they only have one speed
Graeme
Morning Graeme… yes I’m in a similar situation. I have had various diagnosis some through blood work some by physical examination.
I have had surgery too and after a follow up 2 weeks back and the fact that my hands were still buzzing I was sent for a nerve conduction study. A cancellation, meant I was seen on the Saturday. If only that were the case with neurology.
On Monday, I even tried to find waiting times at various hospitals. That was like pulling teeth. It was like there was a protective wall around neurology and the department number just rang out. Despairing right now
In same situation, my appointment has now been brought forward 10 weeks was originally 30 so it is on June 26 which is a Sunday, I wasn’t even aware they did appointments on a Sunday! Hope you get sorted with an appointment soon… X
Someone from PALS emailed today to say that I was on the waiting list (I knew that) and that currently the waiting times are 14 to 16 weeks. I was referred in March as urgent, nearly 3 months on, clearly no such thing as urgent.
So many of us are in the same boat, quess I just got to keep rowing…
I’m 20 years with no diagnosis…Ive gone worse im sure ive progressed…this latest episode has gone 3 months plus…when ive seen someone over the years they ask me why do you think youve got MS…I was told few years ago YOU DONT HAVE MS after scan…but thats it…so what is it? I dont get an answer…The fatigue now is really bad…where to turn to as i get worse and not diagnosed…symptoms need addressing…im hoping to back in a queue soon …a previous appointment was cancelled…and i didnt know…i feel anonymous and worried
Bouds, going private is an option, that said where do you start with choosing a consultant? On this forum there have been both good and not so good experiences with both private and nhs.
It would be worth pursuing both your GP surgery and a Medical Secretary in the Neurology Dept. (more detective work required, as you don’t actually know yet to whom you would be assigned) to jump on any cancellation appointments.
I know when I was referred, the actual referral went through very quickly, the referral letter was through in days. This was followed by a letter which said I was on a waiting list.
There were no numbers just a link to something called ‘mycareplan’ with a note that said check waiting times… neurology department didn’t even appear.
That is when we started playing detective. Worked out that neurology was part of medical outpatients, managed to find a number which we rang multiple times. In the end we went through PALS, who did look into the waiting times. They confirmed that I was on the waiting list, which was 14-16 weeks.
Next step in line with what Graeme was suggesting I have booked an appointment with my doctor last of June, earliest available appointment
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