seeing neurologist on tues

Hi,

I’m seeing the consultant and at the moment I have a very painful ankle and heel. I haven’t done anything for it to hurt and I seem to find at the drs a lot of things I say hurt are dismissed as a poss symptom.I stumble a lot more often now and i can’t judge the depth of steps very well.Sometimes I have blurry vision.And sometimes i don’t make it to the loo intime.(that i find very embarrasing to mention)

what things does the neuro want / need to know?

Hi Anon,

Definitely all the above.

Anything else “odd” that has happened - whether or not you think it’s relevant (don’t censor stuff because it might be unrelated - let the neuro decide).

It might be helpful to construct a rough timeline of when different things occurred. Needn’t be exact dates, but things like “last Spring”, or “about three times this year”.

DON’T just hand your timeline over, however. Talk through what has happened to you, perhaps referring to the notes, if they help you remember. You can leave them with him/her at the end, if you like (remembering to retain a copy for yourself, so you have a record of what you said).

But it’s a waste of your consultation just to hand over a list, but not discuss it - he/she might shove it in the file and forget ever to look at it again.

I suggest you discuss the symptoms that have been bothering you the most, first. That way, if you forget anything, or run out of time, it won’t be one of the “biggies” you leave out.

I definitely think you need to overcome your embarrassment, and mention the “urgency” issue, with the loo. It’s very important they understand exactly what’s been going on with you - partly because it might be an important clue , but partly because many symptoms are treatable. If you don’t mention something, then you certainly won’t be offered any help with it - which is a shame, if it might be something that could be fixed - or at least improved.

It’s also helpful to mention any patterns - anything that makes symptoms worse…or better. Are things better/worse at night. in the mornings, after eating, when tired, etc. etc? Is it worse if you get hot? Does anything help? E.g. is the ankle better if you take over-the-counter painkillers, or does nothing touch it?

You might also be asked about other health problems in the family, as this could provide important clues, as well. Some conditions run in families - even MS, which is not considered hereditary. So if you don’t know already, it’s worth asking relatives if anyone else in the family (even quite distant relatives) had any “unusual” illnesses.

I had quite a distant auntie with MS, that I hadn’t even known about! Strange as it may seem, it is relevant.

I’m sure you’ll be fine. The neuro should prompt you, if there’s anything he needs to know more about.

Be prepared that you probably won’t get any answers on the day, although you might be referred for further tests.

Tina

Great advice from Tina already.

You shouldn’t worry about what your GPs have said about symptoms - very few know much about neurology!

One more thing about your timeline/list for the neuro: keep it concise. People walking through the door with a big long list of symptoms can get written off too easily. What you’ve written here is perfect, plus anything weird that has happened to you in the past.

Do mention the incontinence: it is very relevant (and very common). Believe me, neuros have heard it all before and are completely unshockable so you have nothing to be embarrassed about.

Good luck

Karen x

Hi anon, Great advice above, I wasted my first appointment because I hadn’t taken a diary or notes with me. It was only when I came on here and followed this advice that my appointments became easier for both myself and the neuro. I know what you mean about the toilet issues and please please don’t be embarrassed as loads of us have been through that. Best of luck with your appointment, let us know how it goes. Just one other thing, the neuro might want to refer you on for a lumber puncture. It is up to you if you have one, I was dreading it but for me it was no worse than a sharp scratch. My neuro said it helped greatly for a dx and if that is what is required I wouldn’t be frightened by it. Chis