brain scans? and unhelpful neurologist visit

Getting assessed for your dyspraxia, getting help, disability allowance etc.

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curiositykate
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brain scans? and unhelpful neurologist visit

Post by curiositykate »

I posted an intro post here back in December. Since then I've seen a neurologist about my possible dyspraxia and wanted to share with you my experience of that and also ask for some advice on something.

It was actually a really frustrating appointment. He told me that the kind of dyspraxia he was experienced with was the kind people develop after strokes and brain injuries and that he didn't know a lot about developmental dyspraxia at all. Despite admitting he wasn't the relevant person to diagnose me, he said I probably didn't have dyspraxia, or it would've been picked up before now (I'm 22). He also said he thought dyspraxia was a "dust bin" term, that just means the person has difficulty with certain physical activities. He clearly didn't know a lot about it at all and I was relieved when he said he'd refer me onto a psychologist. He said if the psychologist didn't know a lot about it either then I might have to see a paediatrician -- but that's okay. As long as I see somebody who knows what they're talking about then I don't care who it is.

I was hoping this referral would mean I wouldn't have to talk to the unhelpful, patronising neurologist again, but this week I got a couple of letters asking me to come to brain scans, which the neurologist referred me for. One is a electroencephalogram and one is an MRI. I've googled both of these and I can't really see how the first one is relevant to me -- it seems to be for detecting seizures, which I certainly don't have, or monitoring brain deterioration, but my problems aren't getting worse, I've just always been this way. The second one sounds more like general brain mapping so might be relevant, I don't know. I know I can't rely on the internet for an accurate description of these things, so I'm intending to visit my GP (who is usually very helpful and understanding and said I could come back to him for a chat if I wanted after I'd seen the neurologist) and ask him to explain to me what exactly they are and why they might be helpful in my case.

You see, I have to travel 50 miles to a hospital in Birmingham for these which costs me a lot of time and money. Not just in petrol money, but also because if I take a sick day, I get less pay, but I haven't got a lot of holiday days left to use up. I can't really afford to go all the way there for something that might not help me. After everything the neurologist said, I don't really get the impression he understands what my problems are and while these scans sound like they'd be appropriate in the case of brain-injury related dyspraxia, I'm just not sure it's worth me having them, especially when it's so difficult for me to get there.

If any of you have ever had electroencephalogram or MRI scans in relation to dyspraxia/learning disorders, please tell me if they were helpful and what they were like, I'd really appreciate it :)

Thanks!
Emmur
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Post by Emmur »

I had an MRI brain scan in December, I still haven't got results or been diagnosed with anything theres so many things with similar symptoms it takes ages for them to work it out. The MRI scanner is like a big tube, you lie on this bed type thing and it goes into the machine with you head first. It looks really small and claustrophobic but its fine because they give you a panic button to hold and theres a mirror above your head angled so you can see out of the tube. You have to lie very still and they can speak to you through speakers, mine took about 15 minutes
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gherkin001
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Post by gherkin001 »

Right, I have had every test possible, for my epilepsy. electroencephalogram (EEG) is just a few electrodes stuck to your scalp. Yes it is helpful in detecting seizures, but is designed to detect anomalies in the brain which is the same for the MRI and CT scans. As the medical profession see dyspraxia as a brain malfunction, they are hopin that the EEG and MRI will show them where.

Kirsty
DySpRaXiA dOeSnT mAkE lIfE hArDeR, jUsT mOrE cOmPlIcAtEd.
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