I was diagnosed about a year ago I think and seem to have a lot of issues coping with my MS. When I attend meetings with Nurse and Specialist I just think they keen to say what they want to say and move me out very quickly and everything is very rushed. I don’t think I ever had time to sit down and talk with Ms Nurse and it takes me time sometimes to say what I need to say. I not sure if it is me expecting too much or if not really getting the support. I am arranging a meeting with an MS Center hopefully soon so hopefully that would help answer my questions.
I am sorry that you feel that you are not getting the personal attention you feel you need. I’m afraid that hte MS nurses (where they exist at all) do tend to be pretty business-like, and I think that this often means that interactions with them are brisk and business-like too. Not much time for talking things through. For that, the GP remains your best bet, I think, if you are lucky enough to have a good one. When I was new to MS, I remember my (wonderful) GP saying to me, ‘The neurologist is interested in your MS: I am interested in you.’ She was absolutely right, I think. Hospital specialists (whether medics on the neurologist’s team, or specialist nurses) tend to be interestd in the nuts and bolts of MS and its impact on you. For a discussion about how it affects you as a person, I think that the GP is often a better bet. Not that they don’t have horrendous workloads too - it is just that they are more accustomed to and attuned to the need to look at the patient as a whole person, not just a set of symptoms.
Good luck.
Alison
My MS nurse. I think she’s great for things like asking to be referred to bowel and bladder team. But for neurological quesions I feel I have to speak to my neurologist or read academic papers on MS. The GP’s I have spoken with too have all said they don’t know much about MS.
hi
i was seen by a neurology consultant before diagnosis.
i really liked him and could talk for ages to him. however he passed my case to an ms specialist neuro to get me on dmds.
fortunately my town has a neurologist who does outreach from salford royal. it is my original neuro and i’m seeing him in may.
it works out that i see him once a year and i see the ms specialist once a year too.
the specialist ms neuro is very good but is focussed on the dmd and often i drive into manchester on;y to be seen by a ms nurse.
i look forward to seeing my original neuro because i feel that i can tell him about all the little niggles and he has time to listen.
i know that i’m lucky but feel sad that many of you dont have this.
carole x
Hi All
I’m extremely lucky I have both a fab ms nurse and neuro. Every time I’ve seen them they have made me feel as if they have all the time in the world for me. When I was first dx with likely ms I had so many questions I had an appointment with my ms nurse at 1 pm and he had kept the afternoon free of appointments.
Earlier this month I was called in to see neuro he spent over an hour explaining results of a new mri and confirming a definite dx of ms. My ms nurse then took me into a separate room to go over htings again to make sure I understood it all.
Best wishes
Freckles x
Wow Freckles, you are very lucky. Most neurologists I see I feel they are trying to get me out the door. They say “I am going to have to leave it there as I have other patients waiting”. I walk away not telling them a whole list of things.
Hi My ms nurse is ok quite business like but is a really nice person and the only way I had to leave the last time was because I had my MRI and was going to miss the appointment. Saw my neuro last week and was in an hour was really good. But since coming away I’ve forgot to ask loads typical. When I was first dx I took my dad with me we were in an hour and explained loads to him. I kind of understood it but couldn’t out it across to them. I think I’m very lucky when I hear others on here Em x
Hi !
My current Neuro seems very nice (4th one, after 1st one retired, followed by a young chap who loved the sound of his own voice more than listening to pesky patients, and then moved hospitals making it extremely awkward to see anymore, a ‘rehab neuro’ who was great but very shortlived (…I think she ‘disappeared’ as soon as her function was fulfilled ?).
(present chap is is another young man …I’m sure I have socks olders than him )
But of the 2 MS Nurses I’ve had, both had their own agenda so trying to explain to them what was affecting me was only discussed if it was something on ‘their’ list.
I haven’t bothered to see an MS Nurse for at least 3 years now. I understand that the last one I saw has now retired and her replacement was about to start. Mind you, that was over a year ago and I’ve heard nothing since?!! Maybe this one will actually listen?
Think I’ll try to see what’s happening …thanks for the reminder!!
Dom
There’s 3 MS nurses at my hospital and I have to say that 2 I’ve had conversations with have been great and having an email address is great. I’ve confirmed things by email after a phone-call and make sure everything I want to get across is there, I’ve even emailed after a call to say anything I missed.
I have a shocking memory these days so it’s a god-send. For example I actually said ‘no’ to spasms when I saw the rehab doctor, I felt so stupid when I’d withdrawn fully from my meds and I remembered the spasms! Email to nurse and new prescription a few days later.
Sonia x
The first ms nurse i saw at home was great went through a lot of things with me and seemed to be offering help with lots of things.The second woman i saw was the most patronising and unconcerned creature i ever met,all of my concerns were met with an answer of “it must be the MS” even though when i first walked in she asked me if i had actually been diagnosed with MS,why not look at my notes bright spark the neuro told me in a previous appointment to just accept it was MS and get on with it.NEVER AGAIN!!!
Hi I guess I really am lucky reading all the poor experiences others have. It’s either extreme good fortune on my behalf or they have taken pity on me because everything they tell me goes straight over my head and I probably sit there lloking like an idiot!
Freckles xxx