Good evening everyone, I hope you have all had a good day? I was just wondering, does anyone have a really good relationship with their neurologist?, and would anyone care to share their positive experiences. (Esp. In the Buckinghamshire/Oxford areas. I would be interested to find out your experiences. I have a good relationship with my neuros secretary, (which really helps itch appointments/results). Best wishes, Sue x
with, i mean with, not itch, sorry
Yes I do, he’s at Charing X Hospital in London and I see him once a year for a Betaferon check up and general natter on things MS related. He’s always happy to discuss anything and I don’t feel rushed.
I’ve had four neuros over the years since diagnosis in 1999 and I’ve got on with each of them. The first one was very serious and a bit scarey but that could be because I was new to MS but I got on with him very well and he set me up on Betaferon in no time at all. But this last one is the best and I just hope he doesn’t move on.
I go to the Royal Berks in Reading, I don’t know if that’s any good for you? My neuro has been really good as in he’s explained all the MRI images etc.
Ironically, he lectures at Oxford Uni and I also work in Oxford at the moment lol. But seriously, one of the ladies in the office did tell me when she needed an MRI for something it was very, very quick, much quicker than the wait I had in Reading. So fingers crossed if you are in the Oxford direction, there isn’t any massively long waits, unlike Reading - even my initial neuro appointment was very slow and was only brought forward when my GP’s secretary wrote and requested some urgency!
The first one told me to my face that I did not have MS, only to be informed by letter that I did a couple of weeks later. I liked his sense of humour.
The next one told me that diet & exercise were a waste of time, which I happily ignored.
Then I was told that ldn would eat my liver and was promptly discharged for laughing at him. He did look up goat serum on the MSS site to find out what it was though.
The current chap is fine and supports the same football team, so at least we have something to talk about.
Now in case you are in any doubt, I have a healthy respect for these dedicated professions and hardly their fault nothing can be done for PPMS.
Not the right area but I go to Addenbrooke’s in Cambridge and my neuro is very good. He seems very patient even when I completely misunderstand his question! He always listens to my concerns and, where possible, makes some suggestions to help. He also seems very proactive such as this year where I have had 2 relapses on Rebif he has suggested switching to Gilenya. He doesn’t think it would be wise to stay on Rebif after having 2 relapses in one year on it.
Haha favorite neurolgoist. If I had my time again I’d specalise in an incurable disease. doesnt matter what they prescribe if they get it wrong they just try something else and how would you know if its a fair shout or not.
On my third visit to a different neuro after being diagnosed twice 7 years before , she insisted on going back to basics, hopping round the room and touching my nose etc for the entire hour. Refused to appreciate I’d done that many times before but sid she had seen me do it. I had waited months for that !! She ended up giving me a vitamin D script for about 6 months supply and was completely disinterested and unaware of being brought up to speed re my condition. Total utter waste of time.
I guess there must be some good ones and I hear people talking about their mri scans and how they’d been explained to what they meant, and others talking about good ms nurses etc but in my experience, its been difficult to get any information out of them as theyve held their hands very close to their chests and appear to string things out as long as possible.
I am still waiting for an email response from the original neuro that diagnosed me, theres been nothing after 2 weeks not even a confirmation its been received. This is appalling as he has had plenty of money through me in the past !!
The more I look into this crazy disease, I’m heavily leaning towards, ‘the drugs dont work , they just make you worse’ but I know I’ll see you face again… oh and again and again and again…until my money runs out !!!
Hi, I’m undiagnosed at the moment but the neuro I’ve been seeing covers bucks & Oxford. I wonder if we have the same one?
I live in Cumbria and my Neuro is wonderful, ms is his main interest and he’s so calm, confident and the nicest person. He made sure I was referred to his nurse, the OT and had everything I needed for the best quality of life. After all the bother getting a diagnosis I’m so pleased now to have him.
I had a really good neuro and she has now moved on meeting new one in November feeling quite scared about it. As seen another neuro when admitted to hospital that didn’t agree with the dx but fortunately I have seen a ms neuro at royal free who reassured me that my original dx was correct and started me on dmd’s. He explained everything to me similarly to my local neuro that the mri doesn’t just jump out MS but all things put together and positive lp confirm the dx. MS nurse is great as well and our neurological centre is really good for offering support. I know that I will see a good neuro at least once a year. Barney
I don’t have a favourite,just one that I despise less than the others.
I had three Neuros that were no help at all, before this (current) 4th Gent who actually listens to me and then tries to help. Between appointments, I’m able to email him, because he actually encouraged ongoing communication. And he’s always been everso prompt with his replies and any advice. I don’t know if it’s a cultural thing, but he’s German and just seems to take much more interest in me than his English predecessors ?
Sadly, I haven’t found either of the 2 Ms Nurses assigned over the years to be much use. They both seem to have their own ideas of what needs addressing regardless of what’s actually wrong. (Feels like rather than listen to their patient, it’s a lot easier to just follow a pre-determined plan.) Therefore, I now completely avoid my MS Nurse and have never felt I was losing-out as a result.
I just stick to the local Practice GPs and my Neuro.
(PS: I’m in West Sussex …darn sarf !! )
My favorite neuro was the wonderful gentleman Dr Boggild, who moved on to patures new in OZ. My new neuro is a nice man but he certainly doesn’t fill the shoes left by Dr B. He seems to know what the text books say about MS but if you don’t fit with that, then it’s not really happening or it’s down to being depressed!
Luckily my MS nurse is great and has known me since diagnosis so I tend to not take too much notice of him and discuss things with her, when I see her. She raised her eyebrows when I told her what he’d said to me at my first visit with him and just said well you know yourself and I know what you deal with and how you cope so I wouldn’t worry too much about him!
Nw1, I appreciate that their job is not an easy one, ms is not the easiest illness to diagnose, it is very frustrating for us getting a dx though. And if you don’t get a sympathetic neuro it can seem as if we are just being strung on, sometimes for years, Thank you for your reply, Sue
[quote=“app666”] Hi, I’m undiagnosed at the moment but the neuro I’ve been seeing covers bucks & Oxford. I wonder if we have the same one? [/quote] Hi app666, I am currently under Mathew Jackson. I have seen him twice and his colleague nicky woods. his secretary Jill has been a gem to me. I am waiting now for the results of a lumbar puncture from 3 weeks ago. It is coming up 4 yrs since my first symptoms and am still waiting for the expected def dx Best wishes Sue x
Thank you for all your replies, there is nothing like having a neuro you can trust. This ms thing is very scarey, Best wishes to all x