Happy days - the medical profession pay attention to me!

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Happy days - the medical profession pay attention to me!

Postby babooshka2002 » Wed Aug 04, 2010 1:32 pm

[From one of my blogs - brilliant news]

I've posted some blogs on here about my serious lack of getting anywhere with doctors about my learning difficulty or whatever it is.

I've not (to my memory) posted about this 'dizziness' problem I also have, probably because I've had it since I was at least 3, may have been born with it so it's entirely the norm for me, plus it's completely impossible to describe, because it isn't really dizziness. It's something else - a bad feeling in my head, not quite dizziness, not quite pain, not quite disorientation - it's wrong and intense and horrid, and can happen with movement of my head or sometimes when I am lying still in bed though when lying down it is usually less intense. It affects me in annoying ways, like sometimes being unable to look down at my computer keyboard, or look down at food, pick something off the floor or have my hair cut. It's completely random - it's not happening now as I type, for eg, though it was happening earlier today.

Anyway, the brilliant and fabulous news is that I have have attention paid to me on both fronts all of a sudden, which is quite beautiful and is a testament to the benefits of the Broken Record assertiveness technique, which is basically to pester someone until they cave in. It's also a testament to the benefits of doing your own research.

For the learning difficulty, after I had pestered for years and got precisely nowhere, I asked a friend of mine what I should do, knowing her parents had been an occupational therapist (OT) and a clinical psychologist before they retired. She asked them and they said, see a neurologist to rule out head traumas as a cause. So I thought, alright, went back to the GP and asked for that. I got it. And when a specialist in that field read through all my notes, he thought, "Egads, this woman has significant problems in all kinds of areas that are blindingly evident", was exceptionally sympathetic, expressed surprise that nobody else had put it all together, did a neurological examination on me, sent me for a MRI scan of my head, forwarded me to an OT and reccommended I see a psychiatrist. I mentioned to him that various people had said ADHD to me so I wondered if I could have that or something like it. He said psychiatrists are generally unwilling to give adults that diagnosis.

So far, I have not seen a psychiatrist, but I have seen the OT several times. She says I have some dyspraxic tendencies and she thinks I have problems with executive brain function, though whatever it is has clearly not touched my IQ. The neurologist says I have a slight tremor and am hyperreflexive in one of my feet, and has speculated that my skeletal, muscular, cognitive, balance and motor abnormalities may have been caused by an unspecified neurological abnormality, though I have a normal brain appearance on the MRI scan.

With regard to the dizziness, which may or may not be linked, after years of pestering and getting precisely nowhere, we got a new doctor at our practice who may well be a semi-permanent one. My practice is a training practice and apart from the three main partners, people come and go, but I believe Dr Howson may stay, not sure. Anyway, so I discovered he had experience in ENT - Ear, Nose and Throat - so I went to him because at that point I wondered if I might have BPPV, which is a type of vertigo caused by a problem in the inner ear. He immediately recognised that there was actually a problem in existence and I wasn't making it up, and sent me to the balance clinic at the hospital, who after doing various tests on me for three hours determined that I have a MASSIVE imbalance in my vestibular system. You have organs in your ears to regulate balance, and the one on the right is 70% weaker than the one on the left. At the balance clinic, they said they thought this imbalance was what was causing my problems and will be giving me vestibular rehabilitation exercises.

This may or may not be related to the balance problems I have always had, but I have forwarded these results to my neurologist. Maybe he can come up with something, or maybe it will give him a furrowed brow again as he wonders why I am such a medical anomaly like he said at my neurological examination!

After years of not being listened to, this is mega.

I want to tell the entire world. The ear thing is particularly exciting as it's a problem that's been found on a real, measurable test. A real test! It doesn't rely on my subjective opinions of myself and nobody can tell me I'm making it up or I'm just not trying hard enough or just being difficult. It's real. :D
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Re: Happy days - the medical profession pay attention to me!

Postby abi » Wed Aug 04, 2010 1:42 pm

good for you.

jumping up and down ofthen gets you what you want eventually, well done. :D :D
the way i see it, dyspraxia is an extra hurdle in every race i run, but that extra hurdle, is just extra exercise, so in the end, i will come through stronger.
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Re: Happy days - the medical profession pay attention to me!

Postby Steph » Wed Aug 04, 2010 3:42 pm

I'm glad that you have finally managed to get the medical profession to listen to you and that you will be getting help for the vestibular problems.
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Re: Happy days - the medical profession pay attention to me!

Postby James Brimer » Wed Aug 04, 2010 5:14 pm

You sound just like me when I found I was Dyspraxic, exept I did tell the whole class about Dyspraxia and my petti-mall epilepsy :oops: .
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Re: Happy days - the medical profession pay attention to me!

Postby k9ruby » Wed Aug 04, 2010 6:57 pm

Great news!! It only took 17 years for my difficulties to be fully recognized, so I'm incredibly happy for you. I know the feeling, some people and their parents may be sad or disappointed that their themselves/their child has a 'label' but, for us, after 17 years of fighting, we wanted to open a bottle of champagne. After my mum had been nearly brung to tears with at age 2 for "Shes just naughty and has you wrapped round your little finger", "shes bright and understimulated", "she'll grow out of it", "put her in nursery that will cure it" etc, it suddenly opened doors for support and finally, I could say to people I have a name for it, and knew definitively what it was, that I wasn't a freak for not being able to do certain things and thinking certain ways.
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Re: Happy days - the medical profession pay attention to me!

Postby babooshka2002 » Wed Aug 04, 2010 7:44 pm

k9ruby wrote:Great news!! It only took 17 years for my difficulties to be fully recognized, so I'm incredibly happy for you. I know the feeling, some people and their parents may be sad or disappointed that their themselves/their child has a 'label' but, for us, after 17 years of fighting, we wanted to open a bottle of champagne. After my mum had been nearly brung to tears with at age 2 for "Shes just naughty and has you wrapped round your little finger", "shes bright and understimulated", "she'll grow out of it", "put her in nursery that will cure it" etc, it suddenly opened doors for support and finally, I could say to people I have a name for it, and knew definitively what it was, that I wasn't a freak for not being able to do certain things and thinking certain ways.


Seriously identifying with you here - when I was very young I was identified as possibly having some kind of neuromuscular difficulty, but later on at the age if 4-ish, when my bad behaviours started, my mum was just told she was not being strict enough, that's what kids are like, she's just a super-manipulative child, that's all it is, it's your fault for not being able to control her.

I still don't have an answer for the behaviours - I'm just glad I do not behave like that any more - in a sense I did grow out of that, though I've been left with a whole bunch of different problems to do with organisation, concentration, memory and impulses which may or may not be related to the behaviour.

My poor mum, she tried her hardest. And hey, it could have been worse for me, at least I got extra time in exams for my appalling handwriting and poor visual processing, which was something very much needed.

The list of conditions that I have been fully and properly diagnosed with is growing, even if they don't have proper, neat little names. I'm beginning to understand now why Vicky said she felt like a jar of marmalade with all the labels that she has. I am incredibly grateful for the label though. Some may think that labels stifle a person and maybe that could have been true had I been diagnosed as a child, I will never know. All I do know is that gradually gaining my labels helps me to feel set free from the prison of my conditions. I'm no longer just someone who screws up all the time. I'm someone with differences.
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