I found out yesterday. By chance more than anything. My neurologist doesn’t specialise in ms.. she actually specialises in strokes and not ms! At the ms society event I attended yesterday her name along with all the others in the neurology department at the hospital were on the board. There was six of seven, possibly. I’d seen one of those once and he was an ms specialist. I’d seen the head honcho..the lead in the department quite a few times and the last couple of times this lady Dr. But, she’s not an ms specialist in neurology. I found it quite disconcerting really. I know that you can ask to see another Dr. Can I insist that I see a neurologist who specifically deals in ms?
Go carefully, you don’t want to upset / insult them!
Neurology is a specialism in itself and there is absolutely no chance of encountering a Dr. who has specialised in Neurology who doesn’t know a lot about MS, even if they aren’t spending every day on it.
1 Like
Not my intention to upset or alienate anyone, let alone a dr. It’s only now thinking back over the last couple of years that I’ve seen her that it makes me wonder. I know that I’m fortunate, lucky, call it whatever you like: my ms has been stable on an even keel in the main. Yes, I’ve had periods of relapses over the past two decades and I’ve not seen neurologists or even ms nurses every year. Its often been three years or more. Seeing my ms nurse for the first time since those long ago COVID years now in two weeks time. But I digressed there. But all the neurological drs I’ve seen before this current Dr have all got me doing those tests they do! Standing on one leg! Often with my eyes closed! Walking in a straight line. Laying on a couch whilst they’re stabbing me with a pin to see if I can feel it! Pulling and pushing them away. Now, they may have benefits..or not. That’s another debate. But, she’s never done anything. Nothing at all. Asks me how I’m feeling. Ah, ok. See you in twelve months. Then she wrote a report to my GP with something completely different. Things that were not discussed, or said by me. Another thing that was only discovered by chance. Just recently I have had a few issues. Numbness, spasms, vertigo and the often too frequent blurry vision: too frequently for my liking the blurry eyes..discussing some of them with my GP she was asking when I saw my neurologist last and in their report she’s put I said that I was stressed!! Never said anything like it. I’m not someone who gets stressed. I can’t change my ms so it’s not going to help anything at all if I was stressed. My first neurologist..a very nice, kind gentleman said to me on one of the first times I saw him and this was possibly before he even gave me the diagnosis of ms.. he said don’t get stressed. It’s not good. So, I don’t stress about it. I can’t change it. I can try and help myself though. Eating well. Exercising if possible. Physically and mentally. Excuse the long reply. I am fortunate. I know that. Worked until I took early retirement.. part time work, but working nonetheless. Not ms related, the early retirement. Fortunate to have early work place pensions to be able to do this.
Ah, that’s different. If the calibre of care seems wrong, then at the least you should be asking for a second opinion or perhaps request a different Dr next time. The Neurology Dept should allocate someone different and if they don’t / won’t, then use the PALS (Patient Advice and Liaison Service) - every NHS Trust has one.
2 Likes
In terms of how often and when we see our neurologist there seems to be enormous variation across the UK. It’s years and years ago when I last saw my neurologist - maybe 10-12 or more.
I think that the system used by the MS service ( hospital) where I’m registered is that I see my MS nurse every 6 months and can also contact her about any new symptoms etc and I get an MRI once a year. From what I know the neurologist only sees people for the purposes of the initial diagnosis and after that if they have some significant new symptoms or lesions and a change of DMT might be required.From what I remember of my initial diagnosis session there might have been some assessments like walking in a straight line etc but I’ve never had anything similar since that initial session.
In truth the system makes sense to me . There is a UK wide shortage of Neurologists ( and MS Nurses - and funds for MS services!) and it’s sensible if the MS nurses provide the ongoing support and a sort of triage service to assess whether or not you need to see the neurologist.
I don’t know what happens behind the scenes but I guess it’s possible that there are some regular ‘team meetings’ of neurologists and MS nurses to review all patients/ or those of concern.
@Hank_Dogs when I think back over the years since my diagnosis I’m pretty certain I’ve seen a neurologist more times than my nurse. Haven’t seen any nurse since the second year of COVID.. I know that I could contact her by phone if needed though.. and yet I’ve seen a neurologist every year since the start of COVID. Two different neurologists, I know. Unusual? I’m not sure. Although we all know that it’s a postcode lottery on what kind of treatment, service ( could possibly put that point different but I couldn’t think how too) we get.. or don’t get. And the simple tests I mentioned previously they’ve all done them or something similar, apart from this current neurologist. Obviously her reasoning is different from others.
Got me thinking some rather melancholy thoughts about how and in the main all that they ( nurses and neurologists) can do is monitor us, change our DMT if necessary and refer us to services to help address our symptoms I.e physios, bladder and bowel clinics, swallowing and speech therapy etc.
Also made me think that there is a need for a lot more MS Nurses and various clinic people. More nurses ought to leave more time for the Neurologists to diagnose people and bring an end the ridiculously long and agonising waits that people face in getting a diagnosis !
1 Like
Saw a chart last week regarding ms diagnosis times. The average is just over the year..366 days if I remember correctly but for some very unfortunate people it could take up to 5000 plus days! Fifteen years or thereabouts! Now if that’s not shocking I don’t know what is. It all depends on a variety of things. Not having any technology..or using technology can double the one year wait to two years. It was 700 + days. Can’t remember the actual amount of days for that one. Why does not using the internet make it a two year wait instead of one year? Then religion also comes into it, apparently! Why? Also ethnicity. Think there was ten different categories with varying amounts of diagnostic times. Surely each and every one deserves the same? I see no plausible reason why it shouldn’t be.
It would be helpful to provide a link to the statistics you are referring to.
Are the dates calculated from first retrospectively reported symptom or first contact with GP or first contact with a general neurologist or first contact with a MS specialist neurologist?
There are a host of reasons why diagnosis can take longer or shorter and these can be influenced by culture and belief. One of the best known variations is male/female with men less likely to report symptoms to their GP. Access to the internet gives rise to the worried well.
Joining the MS Register and completing its surveys helps to answer this sort of question
1 Like
Interesting! I think that unfortunately the bottom line is that the UK hasn’t enough neurologists, MS Nurses or MRI scanners - when compared to the EU and we are near bottom of the list by some margin in terms of MRI scanners per head of population . E.g we have something like 6-8 scanners per million while Germany has 30 and the USA 60!!
I believe that not only does the UK perform badly in terms of time taken for MS diagnosis it’s similarly poor in time taken for cancer diagnosis ( with inevitable consequences for survival rates!).
Basically , in terms of healthcare the UK has been sitting on its hands for far too long and is far too reluctant to pay more !
As soon as it’s furnished to everyone who attended last week I will. I’ve emailed the organiser and asked if they are still going to send us the link as they promised that they would.
You’re opening up a whole new can of worms here @Hank_Dogs ! Of course we as a nation should be spending more. But that leads us to another question! Who’s going to pay for it? We all want better services: education, police service, public services in general not least of all.. the NHS. But that takes money. And as everyone knows, governments don’t have money. They raise money through taxes and borrowing which in itself has to be paid for out of taxes. And not many people want to pay higher taxes. Oh, of course they say that we want and need better services but, higher taxation? Not on your nelly! Anyway, we’ve digressed from my original message somewhat. So, maybe we ought to leave it at that.
@crd just received an email regarding the statistics about different diagnostic times. The full paper hasn’t been published as of yet, but when I receive it then I will come back with it. Apparently they’re attempting to gather further information regarding the disparity between different groups so that it’s more persuasive.
The questions you are asking are very apt but the answers are complex and nuanced.
The specialist centre is critical and, unfortunately, how sharp your elbows are.
Although not perfect, the MS Register gives a world class resource. Efforts have been made to increase representation of minorities.
As I said. We’ve strayed far from my original question. And I’ve already mentioned that when the full paper regarding diagnosis times for various groups has been published I’ll come back with it. Or maybe you’re interested yourself. In which case it’s being done at the Cambridge ms research department at Addenbrookes hospital. I’m sure that they’ll be happy to enlighten any interested people. Although as I’ve previously mentioned. The full paper has not yet been published as they’re trying to get more information.. people possibly, to make their report as accurate as possible.
This may be of interest.
Join us for our Spotlight webinar on MS and ethnicity!
Research hasn’t always reflected the diversity of the MS community. And we need a fuller picture to better support everyone living with MS.
For this webinar, we’ll be joined by Dr Ben Jacobs and Dr Sharifa Battashi. They’ll be sharing insights into research exploring MS in ethnic minoritised groups 
Thursday 23 October
6.30pm
Find out how to register here: Spotlight webinar on MS and ethnicity Tickets, Thu 23 Oct 2025 at 18:30 | Eventbrite
If anyone is interested in the inequalities regards ms diagnostic times then you may like to sign up with trusted. It’s the people at Addenbrookes who are carrying out the research.
Hope that helps those interested people amongst us.
I forgot to add that “trusted” also have a Facebook and Instagram page. I can’t help you there as they’re not something I have.
Sure . I guess. I’m thinking it might well become the norm for MS people to see their neurologist only rarely and for neurologist not to be an MS Specialist ( and considering the Channel 4 Dispatches programme ‘Will AI take my job’ , it might not be a real person but an AI generated image talking to you on line with an AI assessment of your latest MRI scan , if and how it differs at all from previous scans , any evidence of smouldering etc and recommendations on any adjustments to your DMT etc)
AI.. chat boxes. I’m not sure I trust any of them..at least currently @Hank_Dogs all good things no doubt..or will be in the future, maybe. But, they’re only as good as the person programming them. On the topic of AI.. the ms research team at Addenbrookes have been trialing new lesion diagnosis with AI. Far more consistent than the usual radiographer in that AI picked up more lesions. I’m sure that will also be on the following too