i have my 2nd appt with the neurologist in a few weeks. I have only met her twice, once 6 months after diagnosis and then another 6 months and then she just put me on yearly as I am not having relapses or anything.
but it has been one tough year! no relapses which i am thankful for but i could give a long list of challenges here but i wont
which is my question. What really should i be saying to her so that we both get the best out of the meeting. i know she will ask me how i have been through out the last year, whats been different from last time, what can i not do now which i havent been able to do since last year and its such a gradual change you feel daft saying stuff when there is other people out there worse off, so i dont want to have a moaning session and i dont think she will want that too.
any practical help appreciated as already i am starting to worry about it
Neurologist every year,thats a treat,diagnosed in 1999 and only seen neuro abot 4 times,although I do have a yearly appointment at local hospital,with a consultant,who passes me of to one of his juniors,I am same as you I have ppms and no wot u call major relapses,although slightly worsening of condition,of which there is nothing they can do,or give you help for,I am in same postion I dont want to go in moaning about minor things,i usually jusst say im doin ok,walking getting worse and balance,they do all the usuall tests smile and say see you in a year,looking foward to reading other peoples replies to your question
Make a list.
Do it on the basis of what has changed for the worse in the last year.
Now sort the list so that you have the biggest problem at the top.
You may find that (on reflection) some of the things at the bottom are fairly trivial - cross them off.
Now rewrite the list.
Bingo! This way you know that you can tell the Neuro what matters to you in the order of importance.
It will save her time, and you will not get flustered trying to think if there is something else.
Very similar story all round, really. I’m on annual appointments too.
Don’t think there’s anything I can point to as a definite relapse. On the other hand, strength and stamina are definitely getting less, and pain is getting more, so I’m planning to raise all of that.
I don’t think it’s “moaning”, and I don’t think it’s “daft” when there are other people worse off, either. Your appointment is about YOU - not how everyone else is doing. Yes, I’m sure they do see worse cases - but that’s true of almost any consultation, about anything.
Just because you’re not the worst case she’s ever had, doesn’t mean your problems aren’t important.
I am planning just to be honest. Though if the appointment is as brief as last time (under two minutes), I don’t suppose there will time for much honesty.
I suppose I’ll have to summarise it something like: “Strength is less, pain is more, baclofen is up, codeine started making me sick… Any suggestions?”
Dunno why I don’t just shove it in an e-mail, really. It’s a long way to go, for 2 minutes.
All I can offer is do not be afraid to ask for all points and questions to be answered clearly and to be understood by you.
Picture the scene. Every year the neurologist performs his tests such as balance, vision, strength and walking etc. He makes lots of notes and along with the “will see you next year” he mumbles “scores have gone up”. Now I leave saying “thanks alot” and walking out I say to myself “what a waste of time”. Now last year, and having foolishly assumed that scores going up was good, I asked whether scores going up was good or bad?
You can probably guess his response. It was “Well, the scores going up means that your condition is progressing”.
I hope mine is NOT going to do any tests. I assumed I’d just be going along for a chat. If he’s going to run the whole gamut of tests, I’d rather just ring up and cancel, as I find the tests stressful in themselves. Any situation where you’re asked to attempt stuff which, by definition, you’re having trouble with, is anxiety provoking. Last time I had a full EDSS assessment, I found it exhausting, as well as slightly humiliating, and arrived home in a rather distressed state - admittedly not helped by my having to wait almost 2 hours in the cold for a bus afterwards.
If I thought it was going to be a re-run of that, I’d certainly give it a miss.
I suggest that you take somebody with you. If they know you and your situation,have a memory,can take notes and ensure that all points are covered, you will get more from the appointment.