I have my 6 monthly neurologist appointment this afternoon and I’m dreading it. I always dread it. This shouldn’t really be the case, should it? I know I’m very lucky to be seeing a specialist (I realise others don’t get this luxury), but it’s always so demoralising. I’m always made to feel like I’m not doing enough to make “my lot” better. I know there’s very little on offer for me, but even symptom management seems like drag. Maybe today will be better.
It sounds like you’ve got an unsympathetic and unpleasant neurologist.
I tend to write down a list of all the things I want to discuss with my neuro. And I refer to it during the appointment. I have been seeing him now for several years and think I know him pretty well. He’s not exactly the warmest of doctors, but he’s professional and I tend to get from him pretty much what I expect.
I’m also fortunate in that I have a yearly appointment with a rehab specialist neuro. He has a tendency to sort of wrinkle his nose up, like he’s a bit disappointed or disapproving of what ever I’ve said, I’ve got used to this now and ignore it since I’ve discovered he does it anyway, regardless of his opinion. He’s actually very useful, he’s excellent on drug reviews & recommendations and referrals to other departments eg OT, physio, wheelchair services, orthotics.
If you’re dreading your appointment this much, maybe you should see if there’s an alternative in your area. It’s possible to change the person you see. If you have a MS nurse perhaps you could be honest with him/her and ask for advice.
Or if you can bear to, think about telling your current neurologist how you feel. He or she might be horrified at the thought that a patient is this unhappy with their attitude. I know it’s an easy thing for me to recommend and a hard thing to do, but worth a thought maybe.
I’ve had three neurologists since 2009 and they all seem like wet fish. At my last appointment I flourished a diagram of the nervous system and told them I’d like to know where my sclerosis was/were (third to fourth cervical vert. since you ask). I treated her as objectively as she treated me, spending more time looking at my diagrams than her.
Alternatively you could try visualising your neuro sitting on the toilet. They are NOT gods.
Hi, I have yearly appointments and I sit in the waiting room and watch the clock tick way past my appointment time and wonder why the chuff I am there.
Then I think why…I am more of interest to them, than they are for me with my idiopathic diagnosis. They are learning from me.
But then I think I should go to appointments for my DLA/PIP benefits.
I think I am going to ask if I can be gene tested as I still dont know if I definitely have HSP…
I’m with Anthony on this. Mine is a cold, removed, aloof kind if lady. Off hand and abrupt, she can be intimidating. I found her all of this to start with, last year. Then I thought about it. She’s the only one in the area therefore all I’ve got, so this was going to be the beginning of a beautiful relationship. (Roll eyes). I take responsibility for my health and my sodding MS, so a bit of assertiveness was called for. I won’t be fobbed off or dismissed with vague answers. Or too technical or medical for my understanding for that matter. I persist with my questions, put my thoughts and suggestions to her, inject a little humor when appropriate. I have to say, we now have a good professional connection. I’m stubborn, strong (usually), confident and intelligent and can be a formidable little lady when necessary. I’ve made sure she’s aware of this! Indeed, they are not gods, and like you Anthony, I’ve had to smother a smile when I’ve imagined any consultant on the toilet, having a poo or wiping their bum. Hah! It works every time!
That kind of thought always makes me wonder what has caused a person to feel that way. If the answer is ‘because the neurologist always tells me that I would feel far better if I lost 2st, stopped smoking and dusted off the exercise bike’ then that’s straightforward! But it can also happen (in consultation rooms as in life) that wires can get crossed and communications can get garbled, so that one person infers something that the other didn’t mean or didn’t mean in that way. In particular, I think that those of us who are less able in a world that (alas) equates health with virtue can easily hear hints that we should pull our socks up from people who didn’t mean anything of the sort. That’s certainly something I find myself very sensitive to.
My neuro is overwhelmingly negative. Every single time I see him its always a fight about what I cant do any more, or the treatments I cant have because ‘research doesn’t suggest that spms will not respond to x or y therapy’. He won’t prescribe steroids (’ research suggests that recovery time is the same after steroids as it would be if you hadn’t taken them to begin with, so its pointless’) and he tried to take away my sativex because he doesn’t believe that it works( how about asking me??!?!). I even had to fight him for a powered wheelchair referral ( I won, btw), and now much prefer to see my MS nurse, who knows how to handle him much better than I do, which meant that I got to keep the sativex. ( thank goodness).
In any event I thank the stars above that I’m now able to self refer to the nursing team and get my problems sorted promptly by them rather than hang about for what seems like an infinity to see his nibs!
Thanks everyone. Well, I had my appointment and I was determined to “say my bit”. I wanted to get across how I am struggling with things; how being able to work is getting harder and harder; how my nerve pain is becoming unbearable; how lots of “little” things, when all put together, are crushing me. But it boiled down to a 2 minute exchange where we discussed my “failure” with Fingolimod (I had a bad reaction to it and had to stop), how I would now be put forward to take Tecfidera (no real discussion); I was then then asked “how I was” so I thought this was my chance, so I started to say “well my nerve is dreadful”, so he interjected about an upcoming appointment I have with a pain clinic and said “well, they can deal with that”. And he stood up, obviously ending the appointment, and that was that. No further opportunity to discuss anything else.
If I can’t tell him how things are, who the hell can I tell? I have an MS nurse (in theory), but getting through to them requires the stars to be aligned and wind in the right direction so I’m lost. My GP feels he can’t do anything without the say-so of my neuro.
I am frustrated by my lack of assertiveness but I’m more annoyed by the inability of my neuro to see me as an intelligent, sensible, adult.
I think when he stood up I would have still sat there and said “I haven’t finished yet. There are some things I need to tell you”.
As for the ms nurses… sheesh!!! Do they believe they are from a higher plane than us mortals!!! Mine is based at the local “private” hospital but (has to) share the private/(paying) patients of the Neuro, her case load of the public/(non paying/poor/me!).
I have definitely felt this undercurrent of “them and me”. I have left voice mails many times, and she has never returned the calls. So now I email her and luckily, usually get a quick reply.
Just a thought, do you have an ms community support group anywhere near you? Twelve months on from my diagnosis, I have only recently started going to mine. No pressure, lots of practical help and ideas are swapped and even some emotional support if wanted.
I do think there is often a mismatch between what a hospital specialist - a medical technocrat - is prepared/able to give us and what we actually need from a physician. And that is where a good GP comes in, of course - and by ‘good GP’ I mean someone who looks at me as a person rather than as a case of MS. As my (now retired, alas) GP once said to me, ‘The neurologist is interested in your MS: I am interested in you.’ GPs like that are a rare breed, alas. Primary care too is becoming more and more mechanical nuts-and-bolts medicine and that vital healing power of being truly listened to in the consulting room is so often forgotten in a world in which the efficacy of a pill is so much easier to measure than the efficacy of a consultation in which the patient feels that her voice has been heard.
At my last neuro appointment he turned up an hour late,i got in room he ticked off my symptoms on a sheet,told he’d see me in six months,appt lasted 2 minutes,all the charm of a wet fish
I am really shocked by a lot of these comments, and I now feel very lucky. I often say I dread my neuro appts but after reading this I wont say that again. My neuro is so so good, but I find his appts exhausting, he wants to know every little thing that has happened, exactly when it happened, the impact, was it raining at the time - he is more than thorough. During my last relapse he quite literally called me at least every other day, sometimes late at night after his clinic/rounds had finished. And I moan about it - no more.
My MS nurses are also fantastic, I have never waited more than a day for them to get back to me. I honestly cant speak highly enough of them.
Hi, my neuro is like many have said aloof but also disinterested and last time I went all she seemed interested in was saying how well I looked and how nicely dressed I was. Great. Appointment over. Saw ms nurse and told her and asked about seeing another one I know is more knowledgeable about ms. So yesterday had a phone conversation with my doctor who said ok I will refer you. I was amazed as I thought it would take me a lot to convince him to refer me then it did. So I will now wait for my appointment.
[quote=“Poppy6488”]
I have definitely felt this undercurrent of “them and me”. I have left voice mails many times, and she has never returned the calls. So now I email her and luckily, usually get a quick reply. [/quote]
The big thing about e-mail is that it creates a record (just ask Hilary Clinton), usually called an “Audit Trail”
With so much medical litigation about, I guess that the nurses would not even want to be seen as slow to respond
The Medical Malpractice Lawyers are now even advertising on TV.
This will undoubtedly influence a lot of communication with patients, sad to say.
Wow, I’m amazed by some of these responses. I’ve had MS for 13 years, I know the deal, I know my body, I’ve been there, bought the T-shirt , the matching knickers and novelty socks.
I wonder if my neurologist looks at me and (forgive me) thinks I’m not “MS-y” enough. I can walk unassisted, I’m still able to work (just). (Please understand I’m not judging PWMS this way - we’re in this together whatever “outward” signs we might show of our illness).
I’m tempted, as one respondent suggested, to ask for a change. My only fear is that the story will stay the same!
I do think you’re on to something there. Certainly that is what I felt at my one and only hospital MS physio appt many years ago, having rocked up entirely under my own steam and not obviously with a mobility care in the world (those were the days!) It was one of those consultations where there is lots going on in a ward-like room and the main attraction was the bed on which a lady in a bad old way was surrounded by physios who were trying to figure out how she could manage to turn over or similar with the aid of only one carer rather than two.
At last, one of the physios peeled off to see to me, looked me and my sore hip up and down and made me feel as if I was totally wasting her time. Or that is what I felt. Much more likely, I was just projecting my own discomfort onto her, of course!
