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A typical neuro consult?

Tell me what happens when you see your neuro, please?

No names - no pack drill please people! I’d really like as many responses to this as possible so no clues as to who your consultant is. Not even a teeny-tiny one or I will request deletion of the entire thread. We can always message each other.

For example:

  • Are you made aware of the purpose of the consultation?
  • Do they do a physical neuro exam?
  • What questions do they ask?
  • If you have prepared a sheet summarising what has happened since you last attended and with your key five questions on, do they read it and address it?
  • Do they start with very open questions ‘tell me what’s been happening?’ or are they more focussed? Do you feel there is a structure and that they are in control and engaged, or does it feel more like trying to explain to some stranger on the bus?
  • Do you have trouble remembering details and dates (brain fog!) and feel pressured, flustered and upset if expected to do so?
  • If you are on a DMT, do they know which one and when you started?
  • Do they know what the common side effects of your DMT are?
  • If you are on a DMT, are they aware of your blood test results?
  • If you are RRMS, do they ask when your last relapse was? Or do they know already?
  • Do they know how your last relapse affected you?
  • Do they ask which symptoms are causing most problems for you?
  • Or don’t they ask about symptoms and impact on your life at all?
  • Do you feel your neuro is interested in helping to improve your quality of life?
  • Do you feel your consultations are useful and constructive experiences with a purpose? Or would you like them to be different?
  • Do you start sobbing with frustration 3 minutes in, snivel and blub through the rest of the consultation then finally stop talking because it is all so utterly pointless? Do you call your MS Nurse in incoherent tears on the way home, then continue to cry for hours and feel utterly ashamed, embarrassed and defeated? And lose sleep? And think you could have spent the £25 it cost to get there on something that would have actually made you feel better, like a manicure, or massage, or even new socks :smiley: And wake up next day and decide you are going to sort the whole system out? No? Just me then :wink:

(by ‘do they know…?’ I mean can they find the info on the computer screen in front of them or do they expect you to tell them everything, not do they have all the details of every patient stored in their heads)

Hi Teal

reading between the lines, I think you need to consider changing neuro’s!

My typical consultation:

Neuro starts by apologising for keeping us waiting. Every time.

Often has random strangers sat in a row in the office - doesn’t tell me who they are.

N asks me how I’ve been since I last saw him. I ask who are these people? He’ll explain they are ‘students’, do I mind them sitting in? No, says I.

I have my paper list in hand so go through that. Anything new he will type onto computer.

N will ask if I can walk unaided to the couch.

Yes. And do so .

Kick shoes off (across the office! Husband retrieves them off the desk) Climbing up is harder - couch is at max elevation. N pumps the pedal thing down to about 4ft.

Do all the finger to nose things. Push him away things.

Then legs. Right leg - sitting up straight lift knee to his hand which is about 10 inches above my knee. Manage to get just over half way.

Left leg - same thing. Start now he says. I started 10 seconds ago. Try hard. I am trying hard. Harder. Can’t try any bloody harder.

Husband trying not to laugh. Random stangers in a row trying not to laugh.

N - OK, put shoes back on. Come and sit back over here.

Well get me down off my pedestal first please. Couch lowered to where I can reach floor with feet.

Finish up with the walk of shame - 25 feet unaided out in the corridor where audience has reached biblical proportions.

All done for another year.

To be serious, first consultation two years ago I really didn’t like him much, he came across as dismissive and I felt I should have apologised for not knowing as much as he did. Now though I like him, he has a good reputation, is efficient (except for time keeping), knowledgable and will take the time to explain things if I ask.

All you past history and test results wil be on the PC in front of him unless he is unaware of tests being done elsewhere - e.g.GP. In which case if you know the result tell him. If not tell him what tests were done by whom and he’ll get his secretary or your MS nurse to get the results.

DMD’s - yes they should know what you’re on etc, If you’ve had side effects - tell him.

Of course every Neuro is different, as is every patient. Just insist on being told things and ask for an explaination if you want/need it. YOU are the patient and YOU are the sufferer. I would say it’s your responsibilty to lead the consultation as far as possible.

Hope you’re ok

AngC

You sound unhappy Teal.

I am very happy with my SPMS care - because I see my GP for my MS symptoms.

I prefer this to the MS Nurse because she takes two weeks to get back to me when I have a problem.

Doctors have different roles:

A neurologist will diagnose and treat a neurological disorder and then advise the primary care physician managing the patient’s overall health.

General practice (GP) treat all common medical conditions and refer patients to hospitals and other medical services for urgent and specialist treatment. They focus on the health of the whole person combining physical, psychological and social aspects of care.

So the psychological and social aspects of care are the job of your GP.

Make better use of your GP especially referrals to the Community Rehab Team who will visit you at home.

Fay

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Hello,

So sorry to read this and, reading between the lines, having a tough time.

It is a year to the date since my last neuro appointment. I next see him on 13 October. Whilst this feels like a big gap, as I’m in a good place with no relapses, no new lesions on my latest MRI (which was taken this June, a year after the last one), see my nurse every three months and am just about to go into R2 lem I’m fine with it. So my summary is based on the various appointments I had last year (both private and NHS which were much the same)…

  • Dr personally picks me up from the waiting room to take me through to the consultancy room (rather than having the receptionist call me in) . Rather than being a nice personal touch looking to put me at ease, the Dr is in fact using this time to start the appointment. When he asks how I am he is not interested in my holiday/ generally - he means in an MS’y way…

  • When we get in the room he immediately pulls my info up on his screen and starts reading out loud his last set of notes as a memory jog. “Miss M. Presented with numb toes… Ah yes - nice lady. Likes hiking”

  • Dr is very blunt and to the point in his conversation with me. He lets me know that decision on DMDs is a combination of what he can prescribe under NICE, what I want him to prescribe and what he is willing to prescribe. I want to know what my lesion load means - he tells me nothing - Some houses have Mercedes parked out front but that does not mean the people inside are rich - I decide that this is supposed to be comforting

  • We rattle through the consultation at a rate of knotts. He has my MRI results, I have a new lesion, the MS is definite and and he’s prepared to say it is active. He recalls I had indicated I wanted lemtrada is this still the case (yes) and I know about the risks (yes). Do I have/want children (no)?

  • He picks up his dicataphone and begins dictating his letter to my GP / referring neuro. “Thank you referring Miss M to me. I have just diagnosed her with definite active RRMS. She’s seems reasonably intelligent (how rude!) and has said she wants lemtrada. I think this is a sensible choice and have referred her to Lemtrada nurses” - Mrs Admin, please send to GP cc patient and referring neuro. Also - message MS nurse to make an appointment " At first it feels odd listening to this dictation - but decide it is useful. I don’t need to wait to see the letter to know exactly what is said - I also recognise it is his way of saving time.

  • He asks if I have any questions (with some trepidation) and I pull out my notebook and make sure everything I had jotted down in advance is answered. As he ushers me to the door he asks my boyfriend if he has any questions, to the consultation is still wrapping up as we leave teh room and he collects the next patient from the waiting room.

  • I check my watch - the whole thing has lasted only 15 minutes! No physical exam.

  • The next day I drop him a summary of agreed follow up points - I have already completed mine. He messages my boyfriend I am fiercely efficient. I decide that from a man who operates the way he does this is a huge compliment!

So in summary, my consultations are brusk and rushed and slightly odd - and I have learnt that I need to go in prepared. However, I really like my neuro. He explains things clearly (usually!), lets me ask my questions and doesn’t talk to me like I’m stupid. More importantly, he recognised I was capable of making a risks based decision and supported my choice of Lem. I’m also a brusk, direct person - so we suit each other

Finally, I know from my nurse that he never discharges patients - and will keep regular (if infrequent) appointments with all his patients including those with SPMS and PPMS who other neuros may discharge into nurses care. I hugely respect him for this and recognise that a lot of the quirks of the consultation are to help him manage a busy client load (although my nurse did say that with some of his less mobile patients their bottom barely grazes the chair as more of the session is spent in teh walk to/from the waiting room!).

It v much sounds like your neuro is not the ticket - or at the very least is not the right neuro for you. Can you get a referral? very happy to give you the details of mine if yours isnt working out or you want to push for a change in treatment.

BTW - I’ve seen my GP twice re. MS. Once as I felt I needed to “check in” given the diagnosis and once to get a smear ahead of lem. On both occasions they were very nice (and professionally curious - as neither had another MS patient and they were very interested in lem) - and definately took more time to see how I was feeling about it all emotionally and to offer me counselling if I felt I needed it (I didn’t - but noce that they cared). Since I’ve been on Lem, all my queries / check ups re lem symptoms/flare-ups have been with my nurse (who is excellent)

K

xxx

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Katy’s right GPs are very ‘professionally curious’, I’m their only MSer and nothing is too much trouble.

They have me tagged on their computer system, so I get quick appointments or sometimes they see me at home!

I am always chatty with the trainee GPs if they are there and tell them all about my condition.

GPs focus on the health of the whole person. Use them.

Fay

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Edited to remove post because I shared too much

Edited to remove post because I shared too much

Edited to remove post because I shared too much

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If you go to your GP and say I need help with x,y and z, I’m sure they will help you.

Also keep them in the loop re social care and rehab issues.

A part from diagnose you, and monitor your decline by ordering new MRIs, the neuro can do very little, especially when you

come off DMD as I have.

What is it you actually want/need?

Is it more emotional support?

Fay

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Do you have an MS Nurse?

or

Try contacting MS Services

Over the years, I’ve found all the info I need online.

Stay positive.

Fay

NHS SystmOne - is Kafkaesque. It’s a giant centralised NHS computer system which lives off all our data.

The GPs, hospital doctors and anyone who treats you, will now add treatment and care plans and carer’s assessments on you

to your NHS SystmOne file. They all have access to this mighty database.

The neuro was adding all the missing data on you. So, a useful appointment.

And they have thousands of patients - how would he know anything about you before seeing you

for the first time!

Is your issue with the doctors more about - how to manage horrid relapses and get the care you need when you have the next

relapse?

A care plan might help ask your GP or MS Nurse or just discuss how to manage yourself at home. Be pragmatic.

I’ve found this American leaflet helpful for self-management during relapses.

https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Nursing-Home-Care-of-Individuals-with-MS.pdf

I’ve only had hospital care twice. I manage myself at home and get the GPs to visit me at home when really awful.

Fay

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Edited to remove post because I shared too much

Edited to remove post because I shared too much

Edited to remove post because I shared too much

I think our experiences, GPs, and probably health authorities, are very different. Thank you for trying to help.

I had hoped this would be a thread about gathering info so that I could prepare better for future appointments and try to get the best out of my ‘team’. And possibly suggest ways that appointments could be more ‘MS’ friendly. As a friend who is a diabetic charity rep said to me today, they should send a form with the appointment letter so that you can fill it in in advance if you are seeing a new neuro. Anyway, it has become a to-and-fro all about me and my problems so I’ll leave it open for a while then delete as much as I can.

Night night everyone, sleep tight xx

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Going to delete my previous comments in 24 hours. Would welcome more information about how other people’s consultations work if anyone is still reading this. I have a plan to.try to make things better for everyone, but could do with a few more perspectives (not on my personal situation but generally) thanks people who have replied so far.

Edited to add: Decided to delete my personal info early because of the involvment of an ‘anonymous’ person, which is silly because of course anyone could be reading it, and I should have remembered that. Lesson learned. Although it feels like we are among friends here, we really are just shouting out to the world.

OK, not sure why you feel the need to be anonymous. Anyway because I want it to get back on track, because I do just want to know what happens when other people go to see their neuro. But it will be disjointed if I just delete my comments now. Because deleting without telling people you are going to do it is rude, especially if you get an alert that someone has replied and you go and look but by the time you do it isn’t there, but other people have read it. Maybe I’m wrong. But at least I’m not anonymous.

Edited to add, see above, decided to delete earlier than planned. Anyone can message me if they want to know more.

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Teal, I think your neuro experience is typical.

The NHS has no time for hugs.

There is little neuros can do. They have targets and time limits.

They can just refer you for MRIs or blood tests if you are on DMDs.

Or refer you to the MS Nurse, or physio or Continence

Advisor or Wheelchair Services.

After 8 years of DMDs, I came off them because I have SPMS.

I didn’t visit the neuro of 8 years, I thought no point.

Then I went last year to update my MRIs

I have an open door with the MS Clinic at the hospital.

I manage myself with the help of my GP and MS Nurse.

I am happy with this arrangement.

Well that’s my experience.

Fay

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I do understand that. I don’t want hugs or anything close. I want it to be scientific and purposeful.

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I think the problem is that we are dealing with real people, with real jobs and real lives. Some of them are empathetic and wonderful at their jobs. Some are empathetic and terrible at their jobs. Some are businesslike and wonderful. Some are just crap. They are people. It’s a bloody shame when we have real problems that we feel are being ignored. Or when we have appointments which leave us feeling dreadful. And for people who feel that they have no support form neurologists, MS nurses, community neuro teams, physios, OTs or any other health professionals, it’s truly terrible.

Some of us have learned how to manage our sometimes difficult heath professionals because we are ourselves quite knowledgeable about our condition and essentially insist on a business like approach; friendly and approachable, but there to support us with specific issues. But for people who have been diagnosed more recently, it can be difficult to wade through the minefield of MS services and to get the assistance we need.

I think it’s a shame when people share a lot about their experiences but ultimately feel that they have ‘overshared’ on a public forum and choose to delete their information. A shame because only by sharing our experiences, good and bad, do we get help ourselves and also aid other people in their own battles with MS professionals.

I hope that you do manage to get the assistance you need Teal. It certainly seems like you’ve experienced some of the people from the ‘crap’ end of the spectrum. Best of luck in finding more useful help in the future.

Sue

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