Neurology humbug

Just been to an appointment @ neurology following GP referral

passed most of the tests with flying colours ( apart from short term memory )

But the tests did not cover the areas I have problems with

Has any one else found this

[sporan]

It's a job to know how to reply without knowing what the issues are that you are having and the reason for your referral. However if you do have short term memory problems it may be that under the stress of seeing the neurologist you may forget or mishear what he's said or may not have told him what he needs to know to properly diagnose your problem.

What I do for my neurology appointments is write down the questions I want answers to and make sure I have someone with me that knows me well (in my case THE wife lol) because sometimes the questions the neurologist asks them or the comments they may make during the consultation can give the neurologist better clues to the cause of the problems and they art usually better able to remember what has been said. Also get your companion to make a note (or if on your own make notes of what is discussed). Your neurologist will usually write to you about what was discussed at the consultation but may not include the FULL details of the discussions you have due to time or other practical restrictions.

Your GP should also receive details from your neurologist (sometimes more detailed or technical) so sometimes a discussion with the referring GP once the neurologist has written to them is often helpful, especially if you have a good relationship with your GP.

You can always write to your neurologist about the issues highlighting your problems and issues prior to any follow up appointments or further referrals. My neurologist is very good at replying to letters I write and telling me that some of the points he prefer to discuss in clinic rather than by letter.

I hope this is of some help to you. Please remember that neurology seems to be one of the most complicated and variable type of medicine to practice (a bit of black art almost in some sections) and even with the best and most thorough investigation specific answers or causes to problems just can't be found but that doesn't mean your problems are any less real.

[Hidden in reply to sporan]

Thanks for your reply I should have made it clear that the referral was retrospective as I had my injury /coma 50 years ago and had received no treatment it was purely chance that whilst researching TBI for my son that in the same week without any prompts from myself my sister reminded me of being pushed through a brick wall by a lorry and my GP reviewed my notes and asked why I never had any follow up treatment following coming out of the Coma (exact words were "you had a life threatening Brain Injury")

Over the last year I have been trying to find out what damage was done and how it affected me there must have been a reason why my parents excluded me from social events for 10 years; the same reason stopped me making friends as I cannot recall my behaviour from that time indeed I still have trouble being sociable preferring not to attend social events

I am to be offered further neurology appointments I think

[sporan in reply to Hidden]

Hi dillm2,

I'd wrongly guessed that this was a new condition and that you were new to the complex world of being pushed to one side lol.

I must say I've always found it hard to get straight answers but then I think in a lot of neurological cases there are no straight answers.

I'm glad that they appear to want to carry out further checks and tests (not because something might be wrong) but to help put your mind at rest and be sure that all is well with your old injury.

As for your sister I love it when family members remind you of thing you'd rather forget lol But sometimes it's good because it can sometimes explain why you fell the way you do about different situations and events.

I hope all is well with your son and that you find the answers you are looking for.

[aqua4]

Hi Dillm, yes only seen one. Asked me a question, I was about to reply and he glared at me and repeated " I ASKED YOU ". I will never forget his face or his attitude. K

[Hidden]

Yes! The NHS CBT woman (only allowed 5 sessions and two were the tests!) who administered the neuropsych tests (exactly the same set I'd had some months before) said she'd never seen such high scores and then couldn't understand why I was in floods of tears - they clearly hadn't measured what I had difficulties with in a normal situation, where distractions compete for attention and you're not in 'exam' mode (and you're not being presented with tasks you remember from the last time you took the tests). She also had no benchmark as to what I was like before, so she had no idea what I'd lost. I remember one of the memory tasks fairly clearly even now - given proper nouns in pairs to remember as pairs. She then reads out one and you say the other. I'd employed a visualising trick to pair them e.g. if it was unicorn and ladder, I'd visualise a unicorn climbing a ladder. Trouble is, that doesn't work in everyday life! And what if you are trying to remember something that involves a series of abstract concepts?! The tests are seriously flawed. They were taken in a quiet room too, when I was having massive problems in busy places with background noise - my brain couldn't screen out the background noise to concentrate on what the person I was engaged in conversation with was saying, or do a task e.g. read (well, that's another thing in itself, reading!). Still have that, albeit to a lesser extent now. And this is so common in people with TBI that it's a wonder they either don't do a control set of tests in noisy environments or scrap the bloody tests altogether! The test for aphasia (that's the one where you forget words for things, right?) was all based on proper nouns too - there was a line drawing of a thing and you had to name it - so I got all those but people still have to regularly fill in words and finish sentences for me now (actually, they don't have to, they just jump in too quickly!). The only thing that really showed my shortcomings the second time I took the tests (the first time, the neuropsych DEVASTATED me by telling me in an everyday voice that I may never work again.....at 42....single .....living alone....no family......so only breadwinner in household...with high-powered, well-paid, job that was my life and defined me......!) was the remembering a string of numbers thing - that's the only thing I couldn't find a trick for. Still angry about it now.

[Hidden in reply to Hidden]

That is very me I am brilliant in a "quiet enviroment " but put me in a social or busy enviroment I can't cope

With the "tests " I had time to consider my response whereas in a conversation situation where I have to respond quickly anything can come out

It is if the communication part of the brain cannot process the information quick enough typing this is a chore getting the words typed as I want them to be

yet my responses when driving are spot on

[Stardrop in reply to Hidden]

Every time they use the Bank robbery scenario. I just wish they'd use a new one. I was trained in remembering weapons, number of robbers and ID strategies and had to watch actual bank robberies footage. It brings back memories, raises my emotions and I do well in memory.......

Give me a piece of writing about cars or football and I'd bomb.

The string of numbers I'm a complete dodo unless there is some sort of sequence.

[SAMBS]

My french 70+ neurologist, told me to walk barefoot about his tiny office, just a slower walk than normal on a dead flat cold floor, about 5', not easy due to longstanding foot problem, said sit down, then just asked me 4 questions in english - 2 of which I have forgotten - one was Who is PM of the UK, other was what do 11 and 19 make - I said David Cameron and 31 ! - only afterwards did I realise my error on the maths. - end of test.

That was back in March this year, 1 yr after BI, plus fall in the May and car accident last November - both involving hard bangs on head. My Dr told me several weeks later the neurologist was satisfied with his examination and that I had no problems as far as he was concerned! I have spoken to Headway about this who said it should have been a longer test than I had - but they like me don't know the system used over here. I do still have several other effects and think that current ones stem more from the car accident effects on the brain - compared to last spring/summer when I was better than now - but some of that is another story, as miraculously since taking matters into my own hands I am now feeling much better just in the last 10 ten days.

[SAMBS]

sounds like we are nearly all in the same boat doesn't it?. I still have what I would call my intellect, so that I know what is going wrong where and when - and know what I must do, who I must write to etc etc, most days I stay home - its calmer here. But put me in from of my huge dossier of medical appointments, blood test results, more appointments not all BI related, its a different condition, but the BI effects are still there and when I have to keep jumping between english and french, it adds to stress sometimes and then I don't cope so wel when I'm out - like in supermarkets, I get so muddled at the cash point - happened 2 days ago and I dropped everythig out of my handbag ehrn trying to get my purse out. I'm lucky I still remember my pin no.! I was at lunch also on Sunday with only 8 other people in the local cafe, only us and the manger there, but the noise from their talking, nearly all were older than me, I couldn't hear if I was asked a question.

At home, knowing what I should be doing and doing it are 2 different things, even. Lack of concentration and self dstraction means end up stopping in the middle of doing spmething and start doing something else, then remember what I should be doing and when I get back to it have forgotten what I was doing - it seems like a viscous circle. I am only recently though finding that when I can't concentrate on finishing something, I make a cuppa or have a glass of water and just sit down for 5 or 10 minutes just zpping through tv channels. Tat doesn't need the concentration that the important things do. But a little while after I can get back to things cos I'm thinking more clearly again.

[MICH451 in reply to SAMBS]

i didnt have any follow up tests even though it says back in 2000 on my notes, nothing sinister. he didnt tell me there was something highlighted on it. nothing had been exsplained to me. only from the hospital were i had operation then i didnt know at the time what contusions was ect, only just found out, by looking it up.

[Hidden]

Update

Just had a text from the hospital asking how I felt about my appointment @ neurology and whether I would recommend the service to hospital - I gave a neutral response; a bit later i was contacted and offered the opportunity to explain why I gave a neutral answer : I was honest with my reply - the consultation was not appropriate to my circumstances

I might write to the Neurology dept and offer positive feedback

[MICH451]

i didnt have any tests after my injury except for one scan it highlighted something, but that was that no follow ups. never have

[amateurwriter in reply to MICH451]

that is the same with me, I was discharged the day after my accident, after tests (which I was unconscious for) a week and a half later ended up having an emergency ct scan because i couldn't stay awake for more than a few minutes, other than that 1 appointment with a neurologist and an mri scan, and no answers, but people on here and headway have given me so much help far more than the hospitals have or any doctor.

[MICH451]

yes i know i only came by this sight by chance around march, I didnt know such a sight existed, and its a help to talk, Its amazing how some of the people have had alot of tests regarding there head injury, i gave up after so many years, as i was going back and forth i felt invisable. never mind, I do remember telling neurologist. in 1999 that the opposite side to the injury hurt back of my head and neck, said it was nothing trouble is in area is still were it hurts after all these years, its sunken on scalp now was a bump. and the blood flow feels stuck in that area. poor blood. i cant do anything about, so i got live with it.xxxxx its got worse over the years. and its not ageing, i have always had it only since the road traffic accident.

[Hidden]

Odd isn't it, just a coincidence? Even when doc (not neuro) at London A&E saw couldn't do foot-shin test she wrote all normal but told GP to refer me to neuro. I remember waving the letter at him (first GP) when I finally got told truth about throat injury & infection (after GPs and hospitals and counsellors/PN all ignoring it). If A&E docs (and she even checked with her superior but he didn't examine me) can't see basic neuro stuff = massive failure. All by mistake? Hmm, the holes line up bit too well - in my opinion. Ahh but tat's 'mad' and 'conspiracy theory'? I so need info, guessed the best I can, try my best to live a life but it's too hard, out of resource and energy. Can't go on fighting. Why must I? Can't make docs et al do anything if they don't want to, but normal people try to help others, what's wrong with them?

[0101]

Hello to all...

Can I just say how reassuring it is to hear that others have 'passed' neuro tests with flying colours when they fail to test what you're truly struggling with. And how environment is key. These tests are therefore invalid and fairy pointless, yet strangely stressful.

Wishing everyone luck for any hoop jumping!