Neurologist appointment! How to prepare

New diagnosis and before diagnosis
1

I have an appointment on Thursday 21st September. I have already had an MRI scan which quite by chance showed up demyelination. I have had symptoms over the years since my daughter was born nearly 19 years ago, but have seen consultants before. I have had vertigo for 4 months now following a horse riding accident. Any advice is welcome.

2

I’m a newbie here so I don’t really know but I’m in a similar position to you, waiting for the first neurologist appointment. Going to take a list of symptoms, and a list of questions, and going to take someone with me, probably my husband, to ask all the things I forget to ask at the time. Bearing in mind that I am VERY forgetful :slight_smile:

Also I want to make some sort of list of exit-conditions, what do I want to not leave without knowing, that sort of thing.

Anyway that’s what I had been thinking of but I will look forward to seeing what others with more experience come up with! Good luck

Anjo

3

Hi Vanessa

Preparation for a neurologist appointment is always useful. First of all, write a list of everything that’s happened to you, with approximate dates if you can. Try to remember how long symptoms lasted and whether they completely went away or left you with any problems.

Think as well about what you want to get from the appointment. This may not always be where the conversation takes you, it will depend very much on where the demyelination is and on your neurological examination. It’s more a way of getting your thoughts in order. If you have any specific questions, write them down. And don’t be shy about taking your notes out, they are used to that.

Another very useful thing to take to a neurologists appointment is someone else. Another person can often remember the things you forget. It’s very easy to come out from a neurology appointment scratching your head and saying ‘what just happened?’ And ‘what did s/he say happens next?’ So if you or the person you take with you (assuming you have one) don’t understand something, ask for clarification.

When you get to the end of the appointment, you should have an idea of what happens next, is it more tests, is it referral to another specialist? Or is it a wait and see kind of ending? In which case you may also want to ask if you can have a further appointment. Or it may be a case of an instant diagnosis or a strong suspicion of what the neuro thinks you have wrong with you. In which case you definitely need to know what happens next.

Best of luck

Sue

4

Thank you Sue.

I am going to have a go at writing a chronology, my symptoms span a long time. But have got better at times not completely. Thanks x

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Thank you Anjo. All the best for you too. X

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Sorry too late to comment. Hope the appointment went ok and you got some answers.

Jenxx

7

hi

when i got my diagnosis, i was introduced to my ms nurse who was sitting in on the appointment.

then i was asked to choose a DMD (at the time it was beta interferon or copaxone).

i had read up on it after following this forum for a year.

the fact that i could just say “copaxone please” made me feel good.

nowadays saying “gin please” makes me feel extremely good!!

carole x

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I;m a bit late for the OP, but the advice I had from a neuro (modified by my own know0how is to: List everything - in your own handwriting - of the things that bother you. Now make another list - hand written again - but grouping all the things from list one that relate to the same part of the body together. Now write out another list (same as list 2) but putting the worst item in each group at the top, and the most trivial at the bottom. Now write out another list of the 5 worst groups (worst first again) with just the two worst items in each group. Now you can type the last list out and print off two copies. Leave one copy at home, and take the other with you. Do not give it to the consultant when you first go in - you want their attention on you. When they say something like “What can I do for you?”, or “What seems to be the problem?”, you will remember everything (that is what all the writing is about), and you can recite the 5 worst groups. At the end of the appointment, then and only then, you can hand over your typed copy. This can be evry useful to the consultant if you have not got to the end of the list, in that they may make connections. You will come across as someone who is not a hypercondriac, but still capable of thinking logically. Geoff

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