Advice for first neuro appointment?

New diagnosis and before diagnosis
1

Just wondering if you would be kind enough to offer me any advice for my upcoming neuro appointment?

I obtained my medical records for ill-health retirement a couple of years ago and going through them recently, I have found lots of symptoms/issues recorded over the last 30 years that may well be relevant as regards my history.

I know I need to keep things brief, but would it be helpful if I made a list of symptoms/dates etc. for the consultant? Would it be useful for him to know how far back these things occurred and when I have had MRI and CT scans in the past?

Remembering what I need to say is difficult at the best of times and I get flustered so easily that I don’t want to waste this opportunity or be fobbed off yet again. I’m probably doing this doctor a disservice here as I haven’t even met him yet, but going on past experience I feel I need to be able to get my point across without being talked over or made to feel like I’m wasting his time.

Any advice would be very much appreciated.

Many thanks.

DD x

2

Hi, what you are asking is very sensible!

My tips for seeing a neuro are as follows;

1.take someone with you, as a second pair of ears and run by them what you are wanting to say, so they can prompt you if necessary

2.yes, do write a list of what happened when, re symptoms…trying to keep it as short as poss (I realise that is difficult)

3.list the dates of any prior tests (these should be in your notes, but the neuro may not have had enough time to read and digest these)

4.list your questions of what will happen next

Finally, good luck chuck!

pollx

3

Good advice from Pretty Polly.

mult-sclerosis.org will tell you a little about what may happen.

George

4

Thank you so much for your responses and for the link; some very interesting information there.

DD x

5

Well my neuro appointment is tomorrow and whilst I have made a list of my history and symptoms, I can’t for the life of me think what questions to ask.

Any advice from you lovely people please? So nervous!

Thanks in advance x

6

hope your appointment went well.

did you think of any questions to ask?

carole x

7

Hi Carole,

Only after we left! I was quite well prepared with a typed history and the doctor (was a Registrar even though I was supposed to see the Consultant who had gone for lunch…) was really nice.

For the first time, I felt he actually listened and took me seriously. I can’t put into words how that felt after being fobbed off for so long. He was very thorough in his questioning and addressed every point on my list individually, which was really helpful so I didn’t forget anything.

He was a bit concerned about some of the tests he did regarding sensation (I couldn’t feel the pin he was sticking in my left leg) and said my reflexes in my upper body were a bit ‘jumpy’, whereas the ones in my lower body were slower.

He didn’t want to commit himself on his opinion without discussing it with his consultant, but he did say he wanted to order head and spine MRI. He also warned me about the fact they could possibly find something else that wasn’t expected and that the next step could potentially be lumbar puncture if the MRI didn’t show clear results.

He asked me to have another test for Lupus (it was negative last time and I think he was clutching at straws) but the HCA couldn’t get any blood out of me, so I have that delight to come again.

I’m trying to take the positives from the appointment and to be honest I’m glad it’s over. Just got to wait now, just for a change…

Thanks for asking

DD x

8

hi DD

sounds like the registrar was good.

good luck with the MRIs

carole x

9

Quick update.

Registrar ‘forgot’ to order said MRI scans and after chasing since November, I finally had them last week, along with an apology from the consultant neurologist. He also forwarded my results, which were ‘normal’ with ‘no significant degeneration’.

Not quite sure how to feel really. I have a follow up appointment with the consultant in a couple of weeks to discuss - though not sure what he will have to say.

The scans took 45 mins altogether with no contrast - does this sound about right for brain, cervical and thoracic scans?

I want to feel delighted that they didn’t find anything obvious, but since my life is still blighted by unexplained symptoms, I’m finding this very difficult.

Is there anything that I should be asking him at this follow up? With nothing significant on the scans, I guess I’ll be discharged and I’m still no further on than when I started.

So fed up I could cry

10

hi DD

at the follow up appointment ask him what it is that is affecting you so badly if it isn’t ms.

it doesn’t half drag on doesn’t it?

carole x

11

rizzo was our resident MRI expert, but alas she is no longer on the forum. However:

Two things you should ask are:
1 - “How many Ts was the scanner?”
The power is measured in Teslas (Ts) and the average NHS scanner is only 1.5 T (Modern ones can be 2T or 3T).
Obviously, the more powerful the better for finding things.

2 - “How big a slice was used?”
A scanner takes a reading and moves you (or rather the platform you are lying on) a small amount for the next one.
Obviously, if it move in 1" steps, then some very big lesions could be missed.
If it moves in 1mm steps, only smaller lesions will be missed.

You may not know what the answers mean, what matters is that you ask the questions (and it might just make the neuro wonder if the test was done right, or if he specified it right).
The time taken does seem to be a bit quick - which is why I wonder if they were doing large steps to save time.

The first item in this forum is a “sticky”, 'A beginner’s guide to the brain, and MRI" by rizzo. Read it, it is really helpful.

Geoff