Should I???

New diagnosis and before diagnosis
1

Got my first appointment with a new Neuro tomorrow. I have not previously written out my sysmptoms for any of the other various consultants I have seen over the past year and hence always forget to tell them something or ask something. So following advice of some i have bullet pointed the symptoms that i have constantly in order of severity, and roughly when they started and the symptoms that are less bothersome and not costant but come and go.

Have also listed medical history and what meds i’m currently on and family history. i have kept it as short and to the point as possible as i don’t want to present him with an essay.

But i do worry that if i give him this he’ll think i am a self obssessed hypocondriac, but on the other hand I kind of feel I’ve got nothing to lose now. Has anyone else here eer written out a list of their symptoms etc for their consultants, and do you think it was helpful?

I’m taking my hubby with me but even so it can take ages to talk through the symptoms and i get my words muddled up i think it might just be easier to hand it to him and let him ask the questions based on what i’ve said. i’ve also got a copy of my previous MRI and copies of other consultant letters etc.

I’m so nervous about the appointment, really scared he’ll just be dismissive like the other neuro

Would you/have you do this?

Thanks xx

2

Hi Bunny,

Do NOT hand over the list - or at least, if you do, not until the end, when you’ve already gone through it.

It’s not because he’ll think you’re a hypochondriac, but he is not going to waste good appointment time sitting there reading it - and neither should you, otherwise you might as well have had your appointment by e-mail!

If you hand it over at the start, it’s an open invitation to him to glance at it before shoving it in the file - never to be seen or discussed again - and you will have to proceed through the rest of the appointment without the benefit of your notes.

Please just use it as a reminder for you. The purpose of the appointment is two-way dialogue, not for you to hand over a list.

By all means, ask him at the end if he would like to have it (make sure it’s not your only copy), but don’t give him the opportunity to file it in the first minute, before quickly moving onto something else.

Hope this helps,

Tina

x

3

Ok thanks Anitra, I’m glad I asked I’ll use it for my personal reference to remind me of things but won’t hand it to him until the end (if he wants it that is).

I guess they all different and all react differently, I hear this guy is really nice but i’m not taking any chances!

xxx

4

Good luck with Neuro appointment tomorrow. I agree with Tina’s advice. Let us know how you get on. Noreen :slight_smile:

5

Good luck with the Neuro appointment. My Sister went in with me as my cognitive skills were all to pot…I would take either a copy or list of meds with you if you are on any then you can pass this to the Neuro or get them photo copied at reception if they ask you (I work for NHS and it really helps if patients bring a list , either I photo copy it or reception do)Obviously your hospital may be different. It’s a little thing but gives you more ‘you’ time in your consultation :slight_smile: Best wishes and try not to worry x Michelle :slight_smile:

6

I took a list of symptoms and it seemed to make me more credible. Like as if I was logical. He filed it. Good idea I think. My symptoms have dramatically changed so I will do this again.

7

Hi when I first went I had a list etc and full medical history written down. I didnt hand it over at first but when I saw him scibbling down all I was saying I said that he didnt need to do it as I had written everything down. He said great ‘I wish all my patients would be as organised as history is so important in neurology conditions.’

Best of luck Bunny

Moyna xxx

8

Thanks for you support everyone. Keeping my fingers crossed for a good consultation. Will let you know tomorrow xx

9

HI,

I hadn’t even thought of doing this but it’s a great idea!! Every appointment I have had so far I have managed to forget at least 2 symptoms, I have my first neuro appointment this week also so better get listing!! Thanks for the advice and sorry for hijacking!!

Saz

10

Woke up with you on my mind. All the best today, hope your consultation goes well. Will log on later to see how you got on Lou x.

11

When I went into hosiptal a few weeks ago I found myself being asked the same old questions… and forgetting to mention relevent symptoms or emergencies I have had.

I said to the consultant “Oh bum, I have all this written down at home” and he immediatly sad “Why didn’t you bring it!?”

The thing is, each person you see as you are pushed about will ask the same things so I think it’s a good idea to have a reminder list for you while you speak… if they notice you are reading off a list they can ask for a copy, or as said above you can offer it to them at the end.

I came home from that hospital visit thinking “Oh no!!! I didn’t tell him about my weird holographic visual thing in 2003 and 2013!!.. Oh and I didn’t tell him when my arm used to go dead when i was a teenager!!!”

And many other things I was magically remembering as I walked home.

I now have a typed out list of headings with lists under them

  • Incidents requiring hospital or GP treatment
  • Incidents not seen by hospital or GP
  • Ongoing symptoms

I then put the year, my age, what the incident was and what happened.

Below is an example of incidents I didn’t see anyone about.

2010 (40) Twitching in eye for three weeks.

2013 (43) Getting ready to go shopping when I get the pinpoint holographic image in my vision, I went to sit on the sofa and it grew so big I couldn’t see anything but the spinning holographic ‘thing’

Below is an example of a couple of incidents I did go to GP or hospital about:

2009 (39) May… Shooting, electric pain through shoulder and arm, pins and needles in fingers. Felt like I had to ‘click’ it back so like an idiot I hung off the door and ‘bounced’ to click it back. Did this for about a week and then went to A&E as it wasn’t getting better. Avulsion fracture from inferior lip of glenoid… I think it was called a Bankart? Not sure if it was the fracture that caused the pain or the ‘hanging and bouncing’ that caused the fracture.

2011 (41) March I find a lump under right ear, December 2011 Pleomorphic Adenoma (Parotid Tumor) removed at Broomfield Hospital.

2012 right eye twitching when I spoke or ate. GP said he would refer me to hospital but never heard anything. Twitching lasted 7 months and then vanished!

and finally below a couple of my lovely ongoing issues:

  • Base of neck towards right shoulder ‘fizzy electric crawling feeling’ happens on and off, usually lasts for a day or two then goes. Feels like I have electric maggots crawling under my skin. When I scratch it the area feels numb and sunburnt at the same time.

  • Tinnitus, constant noise in both ears ranges from high pitched tone to low hubbub sound like a bass speaker. Sometimes something clicks and it’s totally muffled but this only lasts about 10 minutes.

I try to keep to things I know might be relevent… for example no point telling him about slipping on the wet kitchen floor and breaking my toe against the dishwahser kind of thing. But anything that ‘might’ be linked I have mentioned…

Now they may look at the list and think “oh ffs” … or they may look at it and think hang on… this and this are odd and shouldn’t happen after XYZ… and lead them on to the path of finding out why over the last year I have gone from oddities to an utter useless not knowing if I am going to be Yzzy today or Old Lady Yzzy.

Be it Lyme, Lupus, Fybro,MS or another tumor I’m at the point where I just want to know wtf is going on so I can DO SOMETHING about it!!

12

The department I work in (as I work for the NHS) we actually post a questionaire out…then my job is to go through the questionaire with the patient prior to their scan…the scanning person then goes through the questionaire again…my boss is a stickler for trying to get as much relevent info as possible…this system works for us.

Also some people can get upset and emotional and if things are written down it helps all, especially if someone is too upset to talk.

If the person has been really thorough filling out their form it means they get scanned (DEXA,DXA - bone density scan)much quicker, whilst they are getting changed I look at their questionaire and cross reference with the computer system.

If a patient is from another district you aren’t on the same computer system so if the referring GP/Consultant hasn’t faxed sufficient details through again a list helps…

Sorry what twittering on :slight_smile:

13

Oh just to point out any additional info I/we scan and save onto our system… so if your Neuro/Neuro’s secretary does their job correctly things hopefully won’t be lost…we are only human however.

Hope today went/goes well :slight_smile:

14

Thanks everyone. Well I didn’t need my notes, his questioning was very thorough (see my post about the the new neuro appt). However he will now see the notes I made as he took my folder and copied everything in there including my list, but at least it summarises everything we talked about anyway.

xx