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advice required concerning neuro appointment

Hi All

 

First I would just like to say a big thankyou to all on here because although I dont participate in the forums as of yet, You have all certainly made me laugh and smile and have been a great help in this world of MS or whatever neuro problem we have.

 

Anyhow, I have my first appointment with a MS specialist on Monday. (was seeing and undergoing tests from a diff neuro and he put a request through for me to see a MS specialist)

 

I know roughly what I would like to ask and say ect thanks to all the advice from here, but am a bit confused on how to tackle the flare-up symptoms ect.

 

Do I bombared him with everything from the past 2 years? lol. Or is it best to keep it short and sweet and only talk about the major flare-ups as I call them and new symptoms. Or does he need to know about everything? The days here and there that I have felt a bit rough.

 

King reguards

Teri x

 

 

 

Hi Teri

Ask him to explain dx
Explain DMDs
What recommends
What good/bad for you
Hoe you can recognise relapse
When yr next appr.
You don’t have long and he do an exam- multi Tash

Mike

Hi Teri,
Welcome, I’m glad that you have seen the lighter side too.

What I did was make a list of your symptoms, some advise what bothers you you most at the top. I personally work my way from top to bottom of my body, I just find it easier. So vertigo, or eye pain top then work down towards feet.

When it comes to episodes just put rough dates month/year and how symptoms appeared. Roughly how long the episode lasted.

Take a copy and talk to doc, scribble notes on your copy, as to how s/he answers to your symptoms.

Good luck, keep calm…easier said than done I know.

Ppx

Thankyou for your replies

 

Spent last night making my lists of everything.

 

Brain fog doesnt help at times does it! lol. Think that is the symptom that frustrates me most.

Forgetting what I am doing, not getting the words out I want to use ect. Doc is used to me handing him pieces of paper now.

When I got admitted to a&e for something, the doc asked me how much do I drink! She got the glare from hell and told her I dont drink. Wish I did, but it makes my problems a lot worse.

 

Still trying to understand the relapse and flare up bits. Have realised that some things are here to stay, I think.

Put it this way, some things havent got better in nearly 2yrs now and are with me constantly.

Will ask neuro about this to clarify it for me.

 

Teri x

Definitely go for short and sweet prioritised. Be aware that submitting a lengthy list can in itself undermine your credibility i.e. you dont want to be viewed as being 'poly symptomatic'.

'The more physical symptoms a patient presents with the more likely it is that the primary presenting symptom will not be explained by disease. A long list of symptoms should therefore be a “red flag” that the main symptom is functional.'

http://jnnp.bmj.com/content/76/suppl_1/i2.long

Hi Teri - I would like to add to be warned of your neuro dismissing symptoms as nothing to do with ms and you’re just hypersensitive. This really bugged me as I was having these symptoms that weren’t normal - so what were they then if not ms???
Also do ask for a copy of the letter the neuro will send to your GP
Remember you may not get to see your neuro for six months so ask everything you need and write his answers down. You may think you’re taking too long but you’re not it’s your appointment.
Take a partner close trusted friend with you so they can remember what you don’t and may have good questions too
Hope this helps and your appointment goes well
Hugs
Min xx

Thankyou for your advice Mr Bowbowen and min

 

My list is short and sweet and knowing me, it wont ever come out of my pocket and I wont talk about half the things I want to.

But at least I know in my head I am prepared! lol

 

I am one of those people who tend to clam up when I see the neuro.

I usually let them do the talking and I just nod my head.

 

I am lucky and have a very good doc and my last neuro was very good too.

Am a little anxious about seeing the MS neuro though for some reason.

 

 

 

 

 

 

 

 

 

Hope your appointment goes well tmw :) Im seeing my neuro tmw as well ,hopefully it will go ok ,just want some answers now .

Sam x

You are supposed to get a copy of everything that the Neuro (or any other specialist) writes to your GP. Some of them are very good at forgetting to do this. Asking “Will I get a copy of your report?” is a nice way of reminding them.

You can also ask your GP if he/she has had a report - and can you see it - if you do it within six weeks of the appointment.

Read the NHS Constitution for a check on your rights to be kept informed.

Geoff

Thankyou DoctorGeoff

 

I didnt know this. Yet makes perfect sense to me.

When my daughter was very ill, they sent me copies and so does the genectic place that I visit for a diff reason.

So why shouldnt  the neuro department?

 

I will make sure this is at the top of my notes in bold.

 

Teri x

Great link, mrbobowen. Interesting reading from ‘their’ perspective.

A word of caution...

You are the only person who knows you and what you are experiencing. Neuros are not Gods. It is absolutely essential that you make sure that they have the right and full information - correct them if they are wrong and do not exaggerate or underplay things.

I know that this can be very hard for many people and I really do sympathise, but you do no one any favours by not sharing or by nodding your head along to whatever they say; least of all yourself.

So...

Use the list. (Focus on the main symptoms, but also make sure that you tell the neuro about when and how long things have happened so any patterns are clear, e.g. have things just got worse over the years or are there clear periods when things are bad, but they get better between times? Let the neuro have the rough dates so he/she can work out any pattern.)

Read it out. (Keep an eye on the neuro - if he/she is making notes, let them finish before you read the next bit out.)

Give the neuro a copy and keep one for yourself.

 

Good luck :-)

Karen x