Medical Diagnosis

Hi Everyone, I don't know if everyone is aware or not, but I still as of yet have not gotten a diagnosis for my condition. It may seem crazy to be a part of a brain injury support group with no official diagnosis-but it has been to hell and back trying to get a doctor to recognize an abi after the point of initial trauma-especially when the damage is at the neuronal level. Ugh. Anyways the world of neurologists and the stories of dealing with them will be saved until after I get my eval results on Wednesday.

23 Replies

  • I hope it doesn't take too long for you to get your diagnosis Nageen. At least you will then have information you can work with.

    You know we are supporting you here on Headway, so chin up Girl! You can do it!

    Shirley xxx

  • Hope you get some results on Wednesday. Don't be too disappointed it they say that 'it points to..' and they still don't commit. Have you read the 'Brain Injury Survivor's Guide'? The story of a US lady Beth Jameson who had hypoxic brain damage. It took a while with her to diagnose and get help with rehab, she eventually went back to work. I had to read it bit by bit with stickers on helpful pages to go back to.

  • Yea I know about her. She's awesome, but i'm sad because she never recovered she just learned to deal with it. I want a miracle!

  • Miracles don't happen Negeen, we all want to recover and be as we were before our BI's but accepting we won't and learning to adapt our lives according to our circumstances and accept them, is the best way to help yourself, that's how we help ourselves and there are some wonderful stories on here about how well people have done after their BI's and also so many physical injuries and disabilities to ovecome.

  • I really should feel bad though because like Beth's injury is 1000 times worse than mine. I'm doing good in comparison to others who have suffered hypoxic damage- I have like the best possible outcome. I have my peripheral vision, All of my muscles work fine, I'm not paralyzed, I breathe, eat, talk, walk on my own. So really I'm probably best case scenario in a bad situation. Yet people worse off than me manage to find happiness.

  • In the general scheme of things weighing everything up I think I got off lightly too... within two months of my accident there were reported cases of three other similar incidents...none of those people survived. People kept telling me how lucky I was but to be honest I never felt lucky. Although I too can walk ( a bit wobbly sometimes) and talk (not always as coherently as I would like) my life has changed beyond recognition.

    I looked at some celeb/high profile cases and wondered how on earth did they recover so well when I could not...only to later learn that their 'recovery' was not as complete as the media spin suggested. Still it all managed to make me feel worse. Even with support of family and friends (and I know I am really lucky in that respect) TBI survival is a lonely road to travel. Acceptance is something we all struggle with to some degree. Every time I think I am reconciled to my lot something will come along to remind me just how much I lost and for a few dark moments I am lost again...

    I try really hard not to compare my situation to that of others...we were all individuals before our injury and our collective experiences do not change that so we will react and experience things differently. I have found that to look too far inward is to risk staring into an look backwards means I cannot look forwards and forwards is where I need to go.

    A neuro team member once told me to "go and live a simple happy life" ..t still not sure excatly what that is or how I was meant to do that??? They also said that I was unnecessarily tortured by my pre injury intelligence and that were I less intelligent to start with I would have found my situation easier to handle. I still haven't figured out if I should have been encouraged or felt insulted...but looking forward I have better things to worry about.

    I know you are pinning so much on getting a diagnosis this week and I really hope you get the information you need... but you should also be prepared that this may not happen, that results may be inconclusive or may state that a set of results are "indicative of possible... "rather than a firm diagnosis with a prescribed plan. I really hope you get what you need and although i will be away I will check back for an update.

  • "A neuro team member once told me to "go and live a simple happy life" ..t still not sure excatly what that is or how I was meant to do that??? They also said that I was unnecessarily tortured by my pre injury intelligence and that were I less intelligent to start with I would have found my situation easier to handle. I still haven't figured out if I should have been encouraged or felt insulted... "

    Yes, it's a bit paradoxical that "intelligence" can hinder a diagnosis by hiding problems. I'd kind of reached the same conclusion as your neuro team member - knowing there was a problem and getting help might have been a lot easier and, just importantly, occurred sooner, if I hadn't retained my ability to reason adequately. It was always a puzzle to others how, despite showing comprehension of a subject, I could fail exams or keep forgetting things. "under confidence" and "nerves" were the usual explanation, but even they didn't seem right.

    We've got a similar with my 11-year old. He's severely dyslexic but very bright, and the latter means most of his teachers don't realize just how bad his dyslexia is, the effects it has on his ability to remember and produce work and that "normal" taking methods simply won't work with him.

    However, in my more sanguine moments, I don't think I'd want lose 50 points off my IQ just to have been diagnosed and treated earlier. It's bad enough having to cope with poor memory and attention... Kind of scary to think about being even more cognitively challenged!

  • difficult one for you nemo, so hope your son will soon get the proper understanding and care from the education system that he needs and deserves.

  • Negeen I sought happiness for many years because I was in an unhappy marriage. It was only after I left my husband last year at the age of 65, that I started to feel that happiness - because I knew I had made the right decision to leave.5 weeks later I had my BI and many many problems since, in setting up alone and getting social security help because I was living on a pittance of a state pension then. Then a car accident several months later. writing my car off. I now live in a totally isolated place with no transport, But I am still happier than I was before I left him. I even decided I must move again - to be where there are people. 4 months on from accident that's what I'm doing. You don't "find" happiness - you make your own by the decisions you take about what you want to do with your life and then doing it!

  • Got my fingers crossed for you

  • hang in there, hopefully you'll get a diagnosis or at the very use the start of one.

  • I too am looking for that miracle pill/cure nageen. But the way i see it, unfortunately this brain injury is beyond my control n i have to try and accept it. I dont say that lightly either. Also I think that everyones problems are relative and as important to them as the next person so please dont be too harsh on yourself about that. I agree with SAMBS that when you have a diagnosis at least you'll have info to work with. You seem like a proactive lass so go forth and all the bestest for your appointment. X

  • know the feeling i had my abi in september 2009 it took kings colage hospital 2 years to say i had a problem even tough they got told still disbelive until tests 6 months later had treatment ocupational therapy and speach therapy for 2 or 3 months and nothing else after to continue it will be 5 years in se[tember and people undertanding i have a disability now hope you get help quicker

  • the NHS Health care systems - post operatively basically just don't realise that after effects occur, not immediately but several months or even years later. Thank goodness we have Headway here because the do knoe and understand but even they are a donation funded charity - not the NHS. So thanks for Headway being here for us.

  • hopefully you get some sense this week horrible not knowing and waiting good luck with getting to bottom of it finding out for your peace mind x

  • hope you are doing UK VJ, haven't seen you around for a while.

  • I wish you good luck and hope you feel better. i know ICI Institute deals with Brain/spine problems the hospital is in France.i have not got a clue how much it costs to see a neurologist.

  • A lot is my answer if you are not registered in the health system here as I am.. Fortunately I am classed as an ALD patient - Affection longue Duree, just because I had the aneurysm, bleed and and operation. So visits to specialists arranged by my doctor related to that incident cost me nothing - even a taxi to take to the appointments is free and for the nurse to come to my home to take a blood test quarterly is free because I was diagnosed 2 years ago with Myleodysplasia MDS - basically a blood disorder, so I don't have to pay to see the Hematologist either. Just had my blood test this week and see the H on 31st March. But I get copies of the 'account' for the costs involve, as well as sent copies any test results/x-rays etc. I have 2 CD's with last years brain scans on hem which unfortunately wont 'play' on my computer! My op was 12,000 Euros+ but I had to pay for food and there was a TV in the room. Fortunately I have a french mobile and could call friends free with that or would have been charged for a phone in the room. Michael Schumachers bill is going to be horrendous given how long he has been in hospital in Grenoble, but I guess he has private medical insurance anyway which will cover it all for him. There endeth the lesson on the French health system :-) I would have loved to have had some rehab initially but nothing!

  • Hi Negeen like you i am still waiting for my full diagnosis, my accident was 2006 and only this Christmas i was tested for something called visual vertigo and yes i have that as well the list just keeps getting longer and longer. Hang on in there and you will get your diagnosis. Best wishes x

  • Best luck to you in getting an answer. I know it's hard when your not sure what is really wrong and what the best action would be. Prayers for you that you find what you need to know to start recovering to the best of your abilities! Hugs- Niyani

  • Hugs back to you Niyani! <3 thank you!

  • Hi Nageen,

    As others have said, getting a diagnosis can be a frustrating business, especially in the absence of gaping holes in your head!

    Over the years, I've been suspected, on and off, of having multiple sclerosis and temporal lobe epilepsy. Same evidence, different doctors, different opinions - go figure!

    Good luck with the evaluation.

  • Did you get your evaluation this week or is it next week? How did you get on?

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