Symptom List

New diagnosis and before diagnosis
1

I have an appt with neuro next week so wanted somebody to look at my symptom list. Really wanted to be prepared as much as possible after being told anxiety in July after falling over on rombergs, brisk reflexes etc.

Anyhow hear goes

Sep 2008: sudden onset of verigo (literally sent me to the floor in work out of the blue) lasted 3 weeks

May 2009- crawling and burning pains to right arm occasionaly rt leg and rt side abdo, forgetting words or saying wrong word, memory loss.

Sept 2009- Had EMG that was normal saw neuro got told everyone has these symptoms had MRI ??normal I never saw report and has been lost until I chased it up end of last week and found it so yet to see it

Dec 2009- worsening migraine, still episodes burning pains and crawling sensations to legs

Jan 2011- saw Neuro who said most likely all previous symptoms also due to chronic daily migraine started on daily preventative meds and migraines went.

Mid 2012- Urge incontinence developed

March 2013- Return of burning pains++, falling++, crawling sensation all over, ice cold sensation to leg, forgetting words or saying wrong words, dizzy. Also 2 episodes of faecal incontinence. Kids were holding onto me some days when walking

May- Saw GP bloods normal except low Vit D referred neuro start June

July- Eye test showed new nystagmus and acquired head tild

August- Eye pain nil found except squint to eye changed direction.

Throughout this I have developed fatigue also and probably had few periods of burning pains etc but if they only lasted a few weeks I wont have remembered when they were. I also cant judge distances over this time period and have become very clumsy. Also had times where I thought bed was shaking and it wasnt. Cant have very hot baths anymore as I feel exhausted for a good half hour after and have to lie down.

Not sure what is relevant what isnt any advice. Every time I go they ask me what I think is up. I also get asked if my problem is worrying or disabling. Any advice there also.

Thanks

A

2

It’s good for a starting point, i would suggest that you put your most worrying/disabling symptoms firsrt (regardless of date) so that if you run out of time they have the noted the things that impact most on you. Good luck.

3

Hi arwen, I would keep the symptoms list shorter than that or the neurologist/gp will just switch off. So maybe keep your symptoms list something like: Vertigo - sept 2008 Crawling/burning sensation to right side of body - may 2009 Memory loss/confusion with words - may 2009 At the top of the list should be your symptoms that cause you the most pain/bother and then the other symptoms below that. Consultants don’t generally look at things in date order they are interested in symptoms and treatment given for that symptom.

4

Hi Arwen

I would keep a short concise list as Karina has shown above for the stuff in chronological order in case your neuro wants to go through history from start ( I needed mine for my second opinion). I would also keep a very short list of your current most bothersome symptoms (no more than 5, if you can make it less than 3 even better). So for me at present it would L abdominal spasms, L burning pain (same area) and bowel issues ( diorreah/constipation).

Don’t divulge what you do for a living if feesible and don’t self diagnose if they ask you what you think it is (you could say - well I was hoping it was a vitamin deficiency of some sort but that’s come back okay apart from vit D and that hasn’t made a huge difference… what do you think?) . If it’s a new neuro/ second opinion you may want to think about what you’re going to say as to why you’ve done this (they don’t take too kindly to bad mouthing of others in their profession). They knew what my profession was as the GP had put it in all his letters unfortunately - I said I thought my neuro felt uncomfy as we worked for the same trust.

Can’t think of any other words of wisdom at present but if I do will let you know.

Good luck

Reemz

X

5

Thanks for the advice will condense it down a bit. Last neuro in July kept saying “what else” for symptoms and I ended up wondering if hadn’t told him enough/too much etc. Cos it’s my migraine neuro thought I would say wondered if migraine meds side effects but not all match. Pretty much sure my job is the first thing on any referral letter ever as any doctor always mentions it lol.

6

arwen - really hope your appointment goes well. It’s sio difficult to know what to do for the best, isn’t it?

I’m in a similar position at the moment, and have compiled a list of my main symptoms. However, having read this thread I’m thinking my list may be a little long! I’ve had another look at it and it’s so difficult to decide what not to include, as it is all pretty significant…well, it is to me anway!

Do you think it would be ok to keep the list as it is and just refer to it as a memory jogger and stop when the Neuro has had enough? I will make sure I list things in the order in which they bother me, so he gets to hear the worst things first. Then, if he wants to keep hold of the list he’ll have everything on there.

It’s so difficult, isn’t it, as we all want to get the most out of our appointments (after all, we wait long enough for them!) so want to do everything right.

7

Hi purpledot, I would make a copy of your list and keep one for yourself as a reference and also give a copy to the neuro for them to keep on your file. However I would break the list down into sections and keep 5 symptoms at the top that are the most bothersome/debilitating and then keep a separate section of a list of other symptoms. Neuros have a tendency to focus on 5 things and not concentrate on others so its important to have the worst at the top but also important to keep other symptoms written down with them having a copy so that it can be referred back to. It was only due to my list of symptoms that I finally got a confirmed diagnosis of ms and lupus as my symptoms list didn’t fit with ms alone. So yes it’s important to have all symptoms noted for yourself and for your records. Good luck to both of you with your appointments x

8

Thanks for that Karina…that’s a really good idea. I will separate the 5 most bothersome symptoms at the top of the list, start with those and see who far I get!!!

9

But do make a copy and give them a copy for your file - it’s useful for them to refer back to as well (also the other reason I made sure the neurologist kept a copy is that I didn’t want something to be missed from the list in future appointments etc and for them to turn round and say that I had never told then this symptom before).

10

Ok, will definitely leave a copy with him. Will also let my GP have a copy (I did give him a very long-winded list a while ago with full explanations etc, but am pretty certain he hasn’t read it, so may be he can manage a brief list instead!).

Thanks for the advice…and apologies, arwen, for hijacking your thread!

11

Hi Purpledot hijack away. It is a nightmare sifting out what is and isnt relevant isnt. My last neuro appt he just kept saying what else after every symptom and I didnt know whether it meant I hadnt told him enough, nothing relevant or what.

My list now

Main issues:

Balance issues/falling: 2008, 2009, 2013

Burning pains/Crawling sensation: 2009, 2011, 2013

Word confusion: 2009, 2011, 2013

Urge incontinence: 2012- to date

Other symptoms:

Vibrations 2011 onwards

nystagmus 2013

sudden worsening dyplopia++ 2013

numb lip 2013

numb foot 2013

Any better??

Axx

12

That list is nice and clear and concise and is exactly what I meant- hopefully now they will pay more attention now it is easier for them to look at

13

Much better :slight_smile:

14

Brilliant arwen!

Think I need to drastically revamp mine!

15

Thanks hope it goes well. Just been back to optician for 2 week check following my change in prescription and asked why would go from IN to OUT on prism whe looked shocked did some more tests and apparently my squint has deteriorated even further but eye looks healthy and he said I need neuro review. Told him what has gone on and that have appt for Monday and he was happy as said it really needs checking. A

16

Oh if neuro has no answers etc he’ll sort orthoptist review too A

17

Good luck on Monday, Arwen! Your list is very clear, I’m sure that will be helpful. I’m looking at mine again, now!

18

Thanks reiki were your bloods ok?