Well I have finally moved house back to the Wirral from Sheffield and I had Neuro appointment at the one and only Walton Centre. England’s only dedicated neurology hospital.
Unfortunately, I don’t seem to have had a good experience in Sheffield - 5 minutes in 3 years and questions ignored with Nero in February.
It seems like I have to start all over again with a tickle on the feet by the new neuro - test your reactions and eye check and I might get a MS Nurse sometime this year (maybe). “You must get out more,” he mentioned. I know that’s why I have moved across the country to be able to get out more. I am housebound without help - twice or sometimes three times a week now with my lovely wife or family- yipee!
So it does make me wonder if there is any point in seeing a neuro. What can or should they do with something that is incurable? I don’t know. I don’t expect too much and that is what I get. Nowt. Oh a bit of Yorkshire has came back with me. LOL!
Right lad…here`s a Yorkshire lass talking to you!
To answer your question…
I have seen 13 neuros in as many years and i still don
t have a dx............its as you say…nowt!
Not a lot is the answer!
It’s quite handy to have letters from neuro if you’re claiming benefits. Apart from that… well… it’s a day out LOL… sell quite good coffee at my hospital… oh and they have nice art exhibited… ummmm… yep… that’s about it.
Welcome back to the Wirral,but not so much Walton.There are now two MS nurses trying to do the work of four and they are stretched beyond belief.My view is that after nearly 11 years into our adventure the neurotic is only of use over my driving licence and his report to DVLA and allowing the GP to prescribe ‘more exotic’ drugs.
Should be fun this time around 'cos I need a car licence to drive say a road legal quad bike or a Nippi. They can both be right thumb throttle and right hand brake. I never intend to drive a car again,but what will the folk of Swansea say about this.
I strive to get out every day on Big Bug. It’s hard to be discriminated against at home,and I want to be a burden while I can still enjoy it
There is in fact a dedicated Neurology Hospital in London (The National Hospital For Neurology And Neurosurgery) and they have some specialist clinics for people with MS that are not available elsewhere that I have taken advantage over the years.
At the National Hospital for instance, registered MS patients are given the direct dial phone number for the MS nurses, so that if they are having a relapse or any new symptom they can call for advice. If the situation is serious, the nurses can book an appointment at the weekly Relapse clinic, so a patient doesn’t have to wait too long to be seen.
If you are not at a dedicated Neurological Hospital though, it is pot luck as to whether the Neurologist that you see has any experience with MS, or whether there are any MS nurses. I would imagine it is more difficult to see someone if you are having a relapse, or any new symptoms develop. (although if anyone knows any different, please do let me know)
If a disease is incurable, then all any doctor can do is possibly control the progression of the disease, and alleviate the symptoms. This can make it possible to live with the disease, having an acceptable quality of life.
I saw a ms specialist at the walton centre. He was a complete moron and even questioned whether the Ophthalmologists knew what they were doing. Hi Michael
i’m lucky because my first neuro was fantastic, he saw me through my diagosis. then i had to be passed to a ms specialist consultant who i dont like much - he only asks if i’m still taking my copaxone, doesnt seem interested in anything else (is he a rep from the drug company?).
i still see my original neuro once a year because he does an outpatients clinic in my town. seeing him tomorrow and i’ve got a list of all the things that are bothering me. he always follows up on everything i ask so i’m hoping to come away with some new meds.
it’s the luck of the draw isnt it?
LOL Pat, that’s what I think too! Oh, plus there’s a beautician on the ground floor at my neuro’s hospital and I have nipped in there for some threading.
But, seriously, I think it’s really good for all neuros to see as many MS patients as they can, so that they have an idea about trends & treatments.
My neuro asks me to see him every six months - not because I’m special or need extra attention, but he likes to know how I’m getting on on LDN (and no doubt loves to hear some of my wacky ideas). He also knows that I don’t mind going on trials, if all that’s involved is time and effort, so can sign me up for anything going at the time.
What have neuros done for me - answer is a 7 letter word beginning with ‘f’ and ending in ‘l’
whats the diffrence between god and a neuro?
god dosent think hes a neuro
last time I saw on ,he had no people skills at all,he may be a very clever guy,but they deffo need to learn people skills
I think I may just be extremely lucky.
I have a local general neuro (Hereford) and a specialist MS neuro (Birmingham). Both of them have answered any questions I had to the best of their ability and sorted medication that I require. I have had super support from an MS nurse and her secretary, not to mention the local day case medical unit who deliver the IV steroids. If I can’t get hold of the MS nurse for any reason, I have just been instructed to ring them and they will sort it out. I have a specialist urology nurse and urologist who communicate with my MS nurse as well and they have sorted my problems out in that department. I have also had very quick referral to physio following a relapse. My GP surgery are also helpful and informed. I have to say I couldn’t have been supported any better. I live in a very rural county but they seem to be getting it right. Long may it last.
It is a shame that everybody doesn not have access to the care and support that I have had.
I am similar I have a great neuro. He always listens and answers my questions. However probably no more than you guys could. So what does he do for me? His dept fund my rebif for which I’m very grateful. One thing that bugs me is that he and my ms nurses “police” what my gp will prescribe. Don’t get me wrong my gp is great too. However always has to have the ok from the experts. I just wish sometimes she would take my word for what I need. Instead of me going to the hassle of asking for a letter and the hassle of neuro or ms nurse writing a letter - which causes a delay in me getting the meds I originally said I needed So really in conclusion nothing except diagnose me. However I have not ever been in crisis or had any nasty relapses. Hopefully this will never happen but if it does my opinion may change.
Ask not what your Neuro can do for you, but what you can do for your Neuro.
Hi Marty, welcome back to Wirral, the best place to have ms I was told! There is an ms nurse based in West Kirkby at the concourse, I like you am under Walton though and on my second neuro, he is fabulous, kind and patient. The first one on the other hand was and arrogant b’stard who even told my husband to shut up when he interjected during one of his ruder moments! Good luck with getting out and about Bernie Gallager is the name of the lady in charge at the local ms centre in Pensby and she is wonderful, can’t do enough to help. She may be worth contacting. Chis
Keep the Neuro on board, they come in usefull when it comes to getting benefits etc sorted. (eventually when you’ve prompted them who you are and what your probs are!).
Like Whammel says it isn’t ‘what can the Neuro do for us but what can we do for the Neuro!’