I really don't know anymore. : Guys. I'm totally... - Headway

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I really don't know anymore.

Negeen profile image
45 Replies

Guys. I'm totally exhausted this neuropsychologist is really letting me down. I don't even have the energy to write about it. My scores came back so low, that he is not taking them seriously. Basically he's denying that the loss of consciousness from alcohol poisoning for 7 hours did any lasting brain damage. If you take that out the equation-I have no other reason for my cognitive and memory scores to be so poor. He ultimately basically said it was impossible to score so low and shooed me away. (I scored an 86 on the IQ test)

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Negeen profile image
Negeen
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45 Replies
iforget profile image
iforget

Sorry to hear you did not get the results you were seeking.

philstretchdavis profile image
philstretchdavis

If things don't go the way I'd hoped with other people, then I have to think of ulterior motives. This generally means that he wants you to pay him more money.

Negeen profile image
Negeen in reply to philstretchdavis

He did gave alterior motives because at first he acknowledged that it was possible to have a toxic hypoxia from alcohol poisoning then when he got a phone call from his previous professor/a neurologist who basically said that alcohol poisoning was not causing my problems. That is when he shiftef in his attitude with me, and told me things like "if you really had a brain problem, you wouldn't even remember me."

nemo_really profile image
nemo_really in reply to Negeen

----- That is when he shiftef in his attitude with me, and told me things like "if you really had a brain problem, you wouldn't even remember me." -----

What??? That has to rank amongst the most ignorant remarks I've heard from a medic. I'd expect far more awareness from a professional these days.

Impairment does not necessarily mean total loss of a capability, but it does mean that the function is operating markedly below normal (sort of like being partially blind).

I'm pretty poor at remembering people and events, but I do remember some of them. It's just the same on the tests. I remember a few of the paired words, for example, but the rest are just a mystery to me, yet when I carry out the same test on my (allegedly) unimpaired family, no matter how much they may moan about their poor memories, they usually ace it!

sospan profile image
sospan

Whilst we don't know too much about how much your tests are funded or were administered, Neuropsychologists like a lot of medical professionals fall somewhere between excellent and surprised they found there way into the office each day.

The question is what were you hoping to get out of the session ?

Negeen profile image
Negeen in reply to sospan

Recognition of my sufferring and that i had a true medical problem. Instead i got a bunch of test results that say i'm impaired and a neuropsychologist who said I must be making it up.

BaronC profile image
BaronC

It might just be myself that's picked this up from your posts, but you seem to be putting a great deal of emphasis, even relying on the results of psychological testing, some genuine, some from internet sites, etc. When really, with regard to your 'recovery' none of the paperwork makes a blind bit of difference. Although in your case I think it is, as you appear to be letting those very results hold you back and depress you.

You wont ever be able to concentrate on being true to who you are when you put so much of your faith in what it says on a piece of paper. Do those results change who you are? No? Do they stop you chasing your dreams? No. Do they upset you and hold back your potential? Yes, very much so.

There endeth the lecture

Andy

nemo_really profile image
nemo_really in reply to BaronC

Yes, you're right.

But ( : -) ) given how emotional a subject this is, the results can be very important on a personal level. I know when I got diagnosed, it was a strange mix of shock, grief and relief... although "relief" is probably the wrong word - it was more the feeling of "Oh. So that's why I do/don't ... ".

The results can also be important in that they identify the areas of weakness that one has to compensate for.

It may take several tests, however, to get a consistent picture. Even on IQ tests, there are some days when I simply run out of steam part-way through the test and other days when I manage somewhat better - the difference can be 40 points!

But, ultimately, you have to play the cards you've been dealt.

(The only problem is I'm playing snakes and ladders with no ladders!)

Negeen profile image
Negeen in reply to nemo_really

nemo_really-exactly right.

Negeen profile image
Negeen in reply to BaronC

Baronc, I respectfully disagree. It is important to get a diagnosis, it can even lead you to cognitive therapy and other things that will help you. There is not much room for recovery from toxic overdoses-usually that is permnanat brain damage. Given that it has been so many years since the incident, I'm not sure I will recover much more.

BaronC profile image
BaronC in reply to Negeen

You are more than welcome to disagree, but you seem to be disagreeing with something I didn't actually say. I didn't say a diagnosis isn't important, far from it.

And yet as you just stated, 'There is not much room for recovery from toxic overdoses' (a diagnosis and prognosis in one sentence) when you receive the results of tests I assume are designed to give you and the professional some answers, you let them drag you back, hold you down, depress you. Understandably so to a certain extent, but it wont change anything, anything at all. I'm going now before I just start repeating myself further

Negeen profile image
Negeen in reply to BaronC

The reason the results are dragging me back and upsetting me is because the cognitive testing is returning poor results and the professional is saying I'm a liar basically. Because he is trying to save face in front of the neurologist I was referred by who does not believe alcohol poisoning is the problem.

SAMBS profile image
SAMBS in reply to BaronC

like me you'll be aware that the media and doctors are stressing that heavy drinking over a long period of days, weeks or even months/years will have serious consequences, I've not yet heard about a one off few hours bingeing session casing BI, so think Nageen may be over worrying that that is the cause of her problems.

RogerCMerriman profile image
RogerCMerriman

I presume it was more than a IQ test? And I assume you got a report as well? Maybe have a look at the report in detail in a few days? But equally the Baron is on the money.

Negeen profile image
Negeen in reply to RogerCMerriman

Across the board i'm low average to impaired. But basically because he doesn't believe that alcohol poisoning is legitimate he says i'm just makr stuff up. This jerk.

Negeen profile image
Negeen

What frustrates me is that i'm not getting a diagnosis or even recognition that I have a problem. I fell in the low to impaired range on almost all the tests but then when he wrote the evaluation he said "in absence if organic disease" he wrote it was psychopsomatic. Just because I didn't get into a car accident doesn't mean anything. It's not my fault that he refuses to take the dangers of alcohol poisoning seriously.

sospan profile image
sospan

Apart from seeing my GP ( family doctor) whom just told me to take paracetamol (Tylenol) I spent a year with no medical assessment. Over that time we researched the internet for various answers and ways to help improve. When you do this you have to be careful that you don't make up symptoms to match what you think you should have.

When I had my tests, they indicated that my IQ was relatively normal but had dropped from my previous high state. They did indicate a number of problems with cognitive and executive functions. When I left the office it was mixed emotions, so someone agrees I am not imagining the injuries but since there is no "cure" what difference does it make - I still have to live with it.

With your Neuropsychologists comments you may want to ask for a simple clarification asking that whilst the Alcohol poisoning may not have caused the damage, could something have happened during the period of unconsciousness ? I bet he will come back with some acknowledgement.

Negeen profile image
Negeen in reply to sospan

He will not. You should read this thing- he tottally says I'm a lieing freak who is making everything up.

sospan profile image
sospan in reply to Negeen

Guess its time to find a more sympathetic practitioner and possibly slip in a complaint about this one

Negeen profile image
Negeen in reply to sospan

It's really difficult to find neuropsychologists in my area. And before you see a neuropsychologist you need a referral for the neuropsychologist. I don't know where to go to for a referral. and every neuropsycholigst will ask you if you have had a previous exam and they will read it, this report is so damning. It's basically a 30 page report about how a person with such significant deficits would not be functioning and that I'm a liar. I'm not sure who to turn to for help.

sospan profile image
sospan in reply to Negeen

You could contact the people behind this article to see what support they can give you

pubs.niaaa.nih.gov/publicat...

nemo_really profile image
nemo_really in reply to Negeen

Unfortunately, that can happen, and I long ago concluded that many (not all, but a substantial number) of medics don't seem to be able to cope with anything outside of the Ladybird Book of Symptoms... not that this is unique to medics!

I had a run-in with a very senior neurologist over the arm pain I was experiencing at one time. He was quite adamant that I was either making it up or suffering from stress. So he referred me to a psychiatrist. Fortunately, the psychiatrist didn't think either was true and managed to pursue the neurologist to give me an MRI.. "you know, just to shut the patient up ". The neurologist reluctantly agreed but said it wouldn't show anything. The MRI showed clear evidence of disk protrusion and vertebral damage in all the right places to explain my symptoms . At which point, the psych discharged me, my GP arranged a month's in-patient physio, and the neuro said --- nothing, da nada, zilch.

And before Prospective Memory became of interest to the community, I had psychologists literally laugh at me when I described some of my problems and say it wasn't possible neurologically.

You may, as I did, just have to wait a few years until science catches up with the reality of our experiences.

-------------------

"Ladybird" are a well known UK publisher of children's educational books, especially their learning to read series.

"Look! Peter has an axe in his head! Jane has removed the axe. Spot has given Peter some paracetamol. Job done. No follow up needed. Goodbye Peter!"

"Look! Peter says he has problems remembering things. Jane says Peter is after compensation. Spot says he is just milking it for sympathy. "

"Look! Peter has found the axe Jane took out. Look how fast Jane and Spot can run. Run Jane! Run Spot! "

"Look! It is all right now. Peter has forgotten why he running around with an axe. Silly Peter! "

sospan profile image
sospan in reply to nemo_really

:-)

iforget profile image
iforget in reply to Negeen

If he actually said you are "a lying freak who is making everything up" then that is totally unacceptable and you should absolutely make a formal complaint immediately...if this is simply your interpretation made worse because you are upset then obviously that would be inappropriate.

If I were in your shoes I think I would return to my primary care doctor and talk to them about the results and what they mean. If they also feel that some or all of your issues are psychosomatic in origin then I would ask for a referral to deal with them from that angle. This will either prove or disprove the diagnosis and either you will be helped by any psychological approach or it will prove ineffective and they will have to look at other options...and it seems at the moment this might be a useful approach....Psychological input cab be really useful in dealing with the emotions we all feel as we struggle to rebuild our lives after injury and so may be useful in any case.

Negeen profile image
Negeen in reply to iforget

Primary Care doctors are generally idiots when it comes to the brain. Of course he didn't use those words, but he might as well have.

iforget profile image
iforget in reply to Negeen

I typed a reponse and then realised that right now you are still hurt and angry and so probably unlikely to be open to hearing anything more. Once you have time to process this latest result you will be better placed to regroup and consider your options. I wish you peace.

Negeen profile image
Negeen in reply to iforget

thank you for being considerate iforget.

SAMBS profile image
SAMBS in reply to Negeen

Scan it/pdf it via email to Headway, see what they think!

Negeen profile image
Negeen

You guys. I'm really sad.

Danslatete profile image
Danslatete

Nageem does he use non organic or functional deficit or words like that?

The reason I ask is that during the court process following the accident I had the two sides argued how much was organic damage, how much was organic with functional overlay and how much could be attributed to function or somatic losses.

I too was horrified to be basically called a liar. Why would anyone actually want to live this way? How could you keep up an act of pretense every waking hour? It was very stressful.

In the end they were asked to determine the level of damage or effects that would affect my day to day living and prospects of future employment etc.

although they were disagreeing as to the cause they both agreed the outcome and prospects. This is something I didn't understand at all. In th end it really didnt matter what label they attached to me, the outcome was the same. In other words it really makes no difference to you as a person what label thy use, the effects are th same.

There are information pages on the net about functional loses, can't remember what it's called but I think the dr who does the page was dr stone. I could be mistaken with the name tho due to seeing so many doctors.

barny1 profile image
barny1

Don't take your results and their implications to a Nero psychologist too seriously. I've got very obvious brain damage from an MRI scan standpoint, however all my results in neuro psych tests were in normal range.

Negeen profile image
Negeen

barny1, I wish my prognosis was more like yours. At least you're in the average range. I'm falling into impaired ranges and the doctor is saying he doesn't believe it..

barny1 profile image
barny1 in reply to Negeen

You wouldn't want my diagnosis nor prognosis. I should clarify that from a personal point of view, I'm very much impaired by my functional loses and whether they are the result of organic damage or are psychosomatic is irrelevant to me, the impairment is the same. "Normal" on a psych test does not mean normal in everyday life, but the science and understanding isn't there and for the time being the medics only feel confident of pointing out the obvious cases.

It appears that you were looking for answers for your symptoms and are quite understandably distressed and feel they're not taking you seriously. Your story has been told time and time again by american football players and veterans many of whom have mild TBI/ptsd. Don't attribute "psychosomatic" with non-impairment, brain injury can result in the development in psychiatric disorders or psychiatric can occur regardless of any organic injury that can equally lead to functional loses and therefore depress psych test scores. You should ask them to clarify whether or not they're refuting the possiblity that you have functional impairement regardless of the absence of evidence of organic brain injury.

All in all, you might be distressed that you don't have any answers to your problems but its great news that you don't have obvious organic damage, psychosomatic attributable impairment can potentially be treated after all, brain damage is though irreversible.

Negeen profile image
Negeen in reply to barny1

What I am trying to point out is that it is not psychosomatic, I have been having this problem for years after an alcohol binge incident during which I slipped into unconsciousness for 7 hours. I am greatly bothered that the doctors refuse to acknowledge that permanent brain damage is possible from that.

red_spinel profile image
red_spinel

hello there, i understand completely where you are coming from. I did a number of tests with my consultant, some good, others not, now he thinks im playing around and not being honest...so i raised a complaint. the problem with these people is that they just don't understand it, because they haven't suffered it......

Stardrop profile image
Stardrop

Negeen some medical people will not accept that you have an injury if you haven't got a dent in your head or you've got a big black area on your CT or MRI scan. The guy is saying 'I'm to unsure to put my neck out and say it'd brain damage because the scan doesn't show it'. Say in your head 'he's a t****r and leave it. Your IQ test is much lower than it was before, you can't fake that.

You have a reasonable scenario of how your event happened. everything fits in, you woke up with the right symptoms.

Unconscious (I bet you didn't lay yourself out in the recovery position!) for seven hours after a drinking binge when you were unused to alcohol, blood pressure and heartbeat dropping, less blood going to the brain.

You could ask for psychosomatic tests. If they come back clear he looks a little foolish. The bottom line is you need to get a life back. You are very articulate I wondered if you could write an entertaining blog. You had a life planned but now you need to make different plans or just go for what you want and see what pans out.

I hope you don't wait 49 years for diagnosis

Zoe2345 profile image
Zoe2345

One of the reasons I'm holding back from going to one, they could be like this

SAMBS profile image
SAMBS

Negeen how were your grades in high school and college if you went to one. Low, average or High? Who diagnosed the Hypoxia I think you said once, where here you say you are still waiting for a diagnosis from a doctor and/or neurologist.

Did you research alcohol poisoning yourself and then reach your own conclusion with your diagnosis. I'm not disputing anything you wrote here today - just curious, because it the starting point for you. Doctors in different countries seem to think differently according to circumstances presented to them. The guys (everyone) on here know I am having to deal with the french medical system - not one doctor or the neurosurgeon have used the words Brain Injury to me. I have collared that term and used it to them a)because of circumstances of a spontaneous episode , followed subsequently by 2 real accidents involving bangs to head and b) from becoming involved with Headway, so yes I have made my own diagnosis in absence of an official one here, but at,least I ave not been doubted Most of members here are from UK as I am, but you will all be aware from news reports televised about Michael Schumacher who is still in hospital in Grenoble, that no french doctor interviewed has hinted at 'brain damage' - its like they don't recognise the existence of it! Yet british doctors and press have commented and speculated on the likely outcome being brain damage

Here in france, if you have an accident involving your head - if there is evidence of blood or aneurym or skill damage, they operate, they keep you in a coma and decide when its best to try and bring you out of it. I was lucky, only 3 days. in coma, 10 days total in hospital. So many others here have had much much worse than me, so I count my blessings and yes despite the odd really bad day, like the others here we get up in the morning and hope and try to make it, if not a good day, a better one - but we still have our limitations, and when the realisation kicks in of all the after effects, accept them , learn to cope with them and then adjust to the reality of that day. There is a lot we can do - and most here do - to help ourselves - and I'm the world worst at taking my own advice. But if you need that encouragement and support we are here to give it and the encouragements you will receive when you start feeling more positive about your life prospects and yourself as you start to achieve and look at what you cando to help yourself then the greater the support you will find here.

BaronC was being blunt, not unkind, and I must say I agree with much of what he said. Now have a laugh at my visit to a Neurologist 2 weeks ago.

Enter room, sit down.

Q What is the date. I had to think about that because to me unless I have an appointment the date is itrrelevant. I had to think of yes what was the date of this appointment! So I got that answer right.

Q. What is the month? A: February - no hesitation from me..

Q. Who is the Prime Minister of England. A: David Cameron. - Got that right, when many without brain injury would not have!

Q. What do 11 and 19 add up to? A: 31 oh er no 30!

At the end of that little tst - there was no discussion or conversation between us - he just started writing and said he would give me something to help me! I left there with a 3 month prscription for anti-depressants! Now what the hell is all that about? am not depressed because I get on with the actuality of livig each day as it comes and doing what has to be done. I don't need or want a label. Even one that says Gucci / YSL/Apple or whatever it is.

(I always was lousy at mental arithmetic at school. Yt I helped run a 2 business' over the years being the book-keeper - and with aid of a calculator initially followed by the Excel programme when it came out,and was told by our accountant that every year I presented the best set of accounts, always penny perfect. It may have taken a while to do it, but I did. I still have to look after my household accounts and bank statements now. So as others have said here, it not what a neurologist says or doesn't say that counts - it what you can do if you want to try for yourself.Only you can make your life be what you want it to be. Come back here again and tell us something good and positive you have done and we'll all be cheering for you.

Sorry folks, I just bored you all to tears - but I had a really s...t day with threat of legal action suddenly arriving in my letterbox yesterday and a move in 4 days. So I've spent precious hours or phone and computer when I should have been packing! Hope all guys are doing well and enjoying the sunshine and warmth that's arrived at last. xxxx - wish you all well.

iforget profile image
iforget in reply to SAMBS

SAMBS I was totally shocked at the 'exam' that doc gave you...my first full neuro psych testing took two full days and I was completely wiped by the whole thing...subsequent testing (to check for non existent progress) took 6 hours over two days.

Negeen profile image
Negeen in reply to iforget

Look alcohol is a depressant, there are many other drugs that are also depressants that cause brain damage, so it's not absurd. When the test results revealed such significant impairments-the first thing that a doctor should look for is any organic explanations-such as a drug or alcohol overdose. Upon finding no possible cause, is when and only when doctors should resort to psychological reasons for documented cognitive deficits.

SAMBS profile image
SAMBS in reply to Negeen

not sure who your above is reply is for Negeen, was it in reply to me, or someone else and you are referring to yourself and your own neurological assessment.

If its yourself, then perhaps yes you need some help. Your own admitted unhappiness and inability to achieve yet what you want, i.e. a job, marriage and a family, could be the contributory cause of your depression now don't you think. If your current symptoms and depression manifested only several years after a one off long drinking session of hard alcohol, perhaps that's why the doctors are reluctant to say you have a brain injury or that it was caused by alcohol, at the moment. Do you still drink, as you say it is known its a depressant? I'm sure you will find your answers one day, whether they are the ones you want or not will remain to be seen. As many have said already, finding or knowing the cause won't alter your situation, you will still be the same person you are now but I hope you will be able as of now, to help yourself in your recovery. Concentrate on that - not the doctors. xx

RogerCMerriman profile image
RogerCMerriman in reply to SAMBS

Where you are clearly effects what the medical services pay attenction to.

independent.co.uk/life-styl...

red_spinel profile image
red_spinel

thisi is what my neuro constantabt wrote about me .'This profile is very strongly suggestive of an intentional attempt to perform significantly below optimal level'........this went through to my income protection and work, now obviously they don't believe my condition...

SAMBS profile image
SAMBS in reply to red_spinel

wow, that so demoralising. I'm sure from replies read on here that most of us try most of the time to keep our spirits up, because the support on here is great especially when it makes you realise sometimes, there many so much worse than ourselves.

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