Have you been diagnosed?

A place to talk about your experience of living with Dyspraxia

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Emmur
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Have you been diagnosed?

Post by Emmur »

I went to occupational health about my balance, who did tests then referred me to my GP, who did the same and more tests, then refferred me to a neurologist, who I saw for the first time on Sunday. I didn't mention dyspraxia to him, he did his own tests n stuff then sat me down for a "chat". He didn't even mention dyspraxia, but friedrich's ataxia and vitamin E deficiency, n when I mentioned Dyspraxia he didn't seem to consider it. I do have most I'd say 80% of dyspraxia symptoms and I just looked up friedrich's ataxia and it is horrible! I wouldn't wish it on anyone! I'm REALLY hoping its the vitamin E thing... it could be since vitamin e is digested with fats and I never put on weight even though I eat rubbish... but I'm really scared and I don't know when I'll hear from the doctor.

Anyway I'm not sure I belong on this forum anymore, but PLEASE if you think you have dyspraxia but haven't been diagnosed push or a consultation with a neurologist because even my mum who is a health professional thought I had dyspraxia, now I find out it could be a progressive muscle wastage disease that might put me in a wheelchair and eventually kill me young. You need to find out!! It has alot o the same balance and coordination problems as Dyspraxia.

He did just say he wanted to "rule it out" but that means it is a possibility, and it is rare but then I don't think dyspraxia is the most common thing to think you have so if you haven't seen a doctor and have these balance issues please go to a doctor!!
hmm
tompete123
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Post by tompete123 »

thanks for info
Where did I put that?
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Post by Where did I put that? »

I am by no means a doctor but it might be worth asking your parents (if possible) if you showed signs of dyspraxia before the age of 5. Friedrich's Ataxia doesn't present with symptoms until the age of 5 (or at the very earliest 18 months) but Developmental Dyspraxia should be apparent from day 1.

It's something to consider anyway. The condition is very rare so not statistically as likely as Dyspraxia.
"I only want to live in peace, plant potatoes and dream!"
Emmur
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Post by Emmur »

My dad doesn't have a clue and my mum is very vague about it. All she says is that I reached my milestones on target, I don't think she realy remembers that far back to be honest as she wouldn't have realised she shuld be watching for anything! My gene tests came back and it is not friedrichs ataxia that I have or any of the other dominant things they can test for. Still not too close to knowing what it IS though, the doctor gave a rough name of spinocerebellar atrophy but thats just a syndrome he desn't know whats wrong.

Although a doctor finally took me seriously about dyspraxia and he has refferred me to a neuropsychologist who I have not seen yet. He says I have nystagmus in my eyes and my brain scan came back normal but with a slightly enlarged pituitary gland (MORE to worry about). I wish I had never tried to get diagnosed, it is more worry than its worth, although now Ive started I may as well see what they can find out :(
hmm
Wildcat_madness
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Post by Wildcat_madness »

Its better if you can get diagnosed because at least then you can deal with it when you have a diagnosis. I know I felt better when I pushed for a diagnosis on my Dyspraxia because I had a name for what was wrong with me and I could find out more on how to deal with it.
To see a world in a grain of sand
And a heaven in a wildflower.
To hold infinity in the palm of your hand
An eternity in an hour.

~William Blake
Shadwell
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Post by Shadwell »

don't wory emmur, I ended up with a medical record over flowing well about 2 inches thick, and that is mainly childhood, and all the tests they sent me for to keep my parents quiet.

it sort of felt like the gp's waiting room was my 2nd home while growing up!! as nearly as much there, as actually in school, even taken out of school for gp appointments

yes i wanted to know what was wrong with me, but ended up being tedious numerous appointment after appointment, i loved the time between hospital, and gp's, at least i managed to see my school friends then!!

i suppose it is very important to get the major things out of the way first, even though you are lucky enough to think it is something, it just seems silly and a waste of everyones time by not testing for dyspraxia at the same time as the first appointment, even though it isn't life threatening, if you suspect something, and done research then they should go for the most obvious as well

and maybe give some reasurance while it comes back as being that, then say that they want to check for other things to make sure it is not caused by any of those things
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