I’ve just found out that my first urgent neurology appointment which was supposed to be 13 weeks has now been extended to 35 weeks. As I’m only 26 I’m concerned that this wait will have irreversible effect on me as my symptoms appear to be getting worse daily. I would be interested to know what other people’s waiting times are.
You’re right - that’s not good enough.
I managed to bring mine forward by 3 months by talking to the MS Neurologist’s Secretary. By some fluke, one of the MSN’s diaries had been cleared and was being refilled at another location in the city. So talk to them.
Alternatively, go back to GP and see if they can refer you to an adjacent trust. I was referred originally to Coventry and then got referred to Northampton before Cov came through with the alternative clinic. Just have to work the system.
I paid to jump the queue. Not morally right but I was also 26’ish when faced with a lengthy wait and just couldn’t do it! I don’t agree with having to go private but you have to do what’s right for you at times……
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go back to who referred you as they did it for URGENT. like gcck SAID try another trust if you cant get anywhere.
I’m looking at 10 months to see neuro and December for an mri… my symptoms are getting worse very quickly (feels like raised icp too I had after a head injury years ago), can’t feel my right leg or the right side of my face and the wait is getting to me. I’m 24 so i know how scary it is at a young age 
Absolutely you have to go back to them. They rely on MS being a slow-burn and set their calendars accordingly. However, every now and then, there’s a genuine case which is running faster than normal and they have to be woken from their stupor.
Very frustrating! I had 2 and and e visits, an urgent referral to neurology(which when I phoned for an appointment they said 56 week wait for urgent cases like I’m sorry but I don’t think so)!! Neurology saw me end of July, 5 mris with a dwi on the 5th of august, now driving myself cray for the results!! Sometimes you have to be persistent and make yourself heard I will say though going to see the optician while I was having an ‘attack’ really helped me! Especially having high iop, highly recommend seeing them with your symptoms and getting an oct scan with them as they can refer to neurology etc too
Ive been waiting a year so far, and in that time have had two faĺls due to not being able to make my legs work, one with an overnight stay. I had another fall about 5 years ago when I banged my head badly, was out cold for over an hour and my symptoms have just got worse since then. I now feel like Im sometimes struggling to walk more than a few metres. Have pain relief for fibro the GP called 18 months ago but know I probably still have a long wait ahead. Feel like I could be in a wheelchair soon though so could be much worse by the time Im seen. Then it sounds like it doesnt always show up on MRI’s? I am finding it very hard to explain to others around me how I feel like Im losing my mobility really fast. Anyone had experience of what it costs to be assessed privately in UK and if thats even possible?
Private is certainly an option! I know it’s around £250-£300 for a neuro consultation at the very least, my dr ordered a head scan and 2 on my spine which would have cost me £950+ privately. I waited to see neuro etc and he’s done 1 head, my whole spine and a dwi which I’d imagine I would have been looking at double for… it depends how much you have to throw at private/how thoroughly you want them to look. Ms criteria i believe is more than one relapse and lesions on mris showing DIT AND DIS. Which is different times and different areas, some might not show on just a head mri, some might not show on a spinal one alone, it depends where it is attacking if it is ms. Have you phoned and asked to be put on the cancellation list?
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Hi, i live in the uk and have gone down the private route, i work in the nhs and knew waiting times are long, the waiting time to see a neurologist privately for me was 3 weeks and the mri was about a week, the waiting is awful, i know as im currently going through it, worrying all the time, not sleeping ect, i hope you manage to get sorted soon.
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Thank you so much, that does give me some idea. If I can tuck a bit away pver the next few months hopefully I can go for it soon. I will update GP first I think and look at my letter to say Im flexible for cancellations. Much appreciated.