Getting diagnosed

A place to talk about your experience of living with Dyspraxia

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And27
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Location: North West

Getting diagnosed

Post by And27 » Tue Apr 06, 2010 11:01 am

I'm feeling a bit deflated today. I went to see my GP a couple of months ago to get a referal for diagnosis. I got a letter around 3 weeks ago from the NHS telling me of 5 hospitals in my area that I could attend and today I got a call saying my referal was rejected and I need to see my GP to discuss why.

It's likely that of the 5 options I was sent, the one I chose doesn't have a suitable specialist. If there were 5 on the list do I have to pick one a month till I find one who does have someone I can see? Why can't my GP just tell me who is qualified to see me? I thought that's what a referal is? Why send me a list of places that can't help?!! ](*,)

I've been very lucky with my health and never needed anything more than my GP before. Is this the normal procedure you have to go through to see someone? Call me crazy but if I was a kid with the symptoms would they have pointed me in the right direction first time? Is it coz I'm a grown up and there's probably no treatment this late in the game that this has happened? :-# Nevermind me, I'm just being paranoid and venting!

So back to the GP next week (a new one this time as the last one has now left!) where I get to try and explain whats going on all over again.

Liz944
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Re: Getting diagnosed

Post by Liz944 » Tue Apr 06, 2010 8:11 pm

I had several referals for other issues not related to dyspraxia and one or two have been a little tricky and one which has been a complete non-starter ... Unfortunately you have to grin and bare it... :) The worse thing is the wait for the appointment!

I keep loosing my doctors to maternity and paternity leave... one with two pregnancies closly following each other and the one the wife has just had twins.... :D
Drama is life with the dull bits cut out...

And27
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Location: North West

Re: Getting diagnosed

Post by And27 » Tue Apr 13, 2010 12:03 pm

Well I saw my GP again this morning and it seems that the reason for my rejection was that my problems don't appear significant enough to warrant a referal.

I understand that I've managed so far to get along in life without diagnosis and I have managed to work around my difficulties but the point for me is that I didn't and still don't know what the cause of the trouble is. It's true a diagnosis won't change my life dramatically because I will still be the same person with the same issues but I will be in a better position to cope with them and understand them. So all in all disappointing but not suprising.

I am not going to try for another referral through the NHS but I will try to get one privately. So if anyone has any suggestions or recomendations in the Manchester/Liverpool area I would be interested to hear.

Btw I know I posted this in the wrong area but I was really frustrated when I made the origional post and wasn't really paying attention so sorry! #-o

Evasura
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Location: London

Re: Getting diagnosed

Post by Evasura » Tue Apr 13, 2010 1:17 pm

so annoyihng!!!! rrrrrggggghhhhh!!!!
But the joke is that, why if you go private you will be recognised as dyspraxic, but a public gp won´t you´re or you´re not dyspraxic. same situation here and getting reeeeaaally tired of this madness. Still waiting to hear from GP.
sorry :blush: :@ :!: #-o
Eva in London

Daniel
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Re: Getting diagnosed

Post by Daniel » Thu Apr 15, 2010 11:14 am

It sounds as if many people are having frustrating experiences with diagnosis on the NHS. It seems to be that if you're out of education when you discover there might be a name for the thing that's affected your whole life, you're generally out of luck. Although I can understand that the NHS don't have unlimited resources and that its easier to focus on more tangible health issues, it would really do adults with dyspraxia a lot of good if they could officially attribute a name to what they face every day and use it as a basis to get some help and assistance to progress in life. Instead many are left in a frustrating situation, knowing they have this thing dyspraxia but prevented from an official diagnosis that will enable action.

I'm not bothering to look for a diagnosis for the present. I've wasted the time with a wrong referral in the past, however I'd been told I had 'clumsy child syndrome' when a child and now feel confident enough to use this as grounds to get assistance at work, which I'm now receiving. I'm now also going to get privately tested for a related ND condition though work, so I'm finally feeling things are progressing.

Dan

sarahlouise22
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Re: Getting diagnosed

Post by sarahlouise22 » Tue Mar 15, 2011 9:37 pm

Well my GP has put an email to someone to get me referred so i can be assessed ... so im just waiting really.... really really hope they i can be assessed... im going to university this year and i could do with the disability allowance that they provide... i mean like others have said on here... i have managed this long with out any help.. .but if getting this extra help at uni means i can be on par with all the other students... then great... it would help me soo much.

Osymandus
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Re: Getting diagnosed

Post by Osymandus » Thu Mar 17, 2011 9:52 pm

It's a catch 22 with the NHS at the moment sadly . Many are aware it a growing issues (as are all neurological issues) , but the more mild it is teh more your ignored however at anytime it could be the catalyst for other syndroms or disorders to occur (depression sadly being a common one ) . So with limited resources what happend ?

Keep pushing if your on the NHS , or if you have gorn private return and give teh information to be put on your medical records the more instances that happen and occur teh more imperical data which eventually cannot be ignored !

sarahlouise22
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Re: Getting diagnosed

Post by sarahlouise22 » Thu May 19, 2011 9:14 pm

My GP referred me ... that was in march and i have only just found out by ringing them up that it was rejected because he referred me to the wrong place... they said neurology was the place i should go.. so im going to see them in mid june...only problem is if by the end they say yes you can have the assessment and at the end of that they say i have dyspraxia... my application for Disabled Student Allowance will be too late.. and i wont get what i need before i start uni.

Euphena
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Re: Getting diagnosed

Post by Euphena » Sun May 22, 2011 7:43 pm

I am at a loss to understand why so many on the forum are going to their GPs for a diagnosis. I strongly suggest you get refered to an Educational Psychologist. If your GP doesn't do this. Find a private Ed Psychologist.

sarahlouise22
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Re: Getting diagnosed

Post by sarahlouise22 » Mon May 23, 2011 8:37 am

It costs lots to go to a private one.. hense why people try to get referred on the NHS

Loki
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Location: Birmingham

Re: Getting diagnosed

Post by Loki » Wed May 25, 2011 3:34 pm

My GP and Neuro guys are all to concerned with my migraines to care about anything else, drives me around the bleeding bend.

I got my Dyspraxia diagnosis however. Kind of private, I did it via Irlens and mentioned dyspraxia and they did a massive report for me directed towards a typical company HR dept, as I work for AXA they carry everything on from there. I don't know if a uni would do the same with the same material, but companies like to have boxes ticked for certain disabilities and so on, so they tend to jump at the bit to offer help.

The Irlens testing is for visual disturbances etc and cost me a grand total of £75. And considering what its set in motion and that I see (and have been seeing) my GP virtually every other day since I was born... this has just gone whoosh so fast!
Beware my friends, as you pass by
As you are now so once was I
As I'm now so you must be
Prepare my friends to follow me
/Mary Jane - Megadeth/

agsiul
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Re: Getting diagnosed

Post by agsiul » Wed May 25, 2011 5:16 pm

When do you get your migraines. I'm photosensitive so must wear sunglasses outside no matter what the light is as I'd get a migraine. Also get them from the cold as I have raynauds so if I'm off my medication I'll get one if I was stupid enough to run out when it is cold (been there, done that!).....so my point is that it is obvious that they are connected to the dyspraxia & raynauds....totally unrelated - also get them from oranges....evil, evil fruit!

Loki
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Location: Birmingham

Re: Getting diagnosed

Post by Loki » Thu May 26, 2011 9:14 am

I get them from oranges to! Thats how they found out I'm actually alergic to oranges lol!
I'm really photosensitive, apparently I have gold flecks in my eyes which makes my eyesight really good in the dark (Useless as I'm scared of the dark...) also makes my eyes be all weird and glow gold in sunlight in pictures... I actually have friends jealous of it... The can bleeding have them from all the pain that it brings!
But if my ears get cold... Migraine... Soemthign to bright, Migraine, stress... Migraine...

Oddly the things that don't give me migraines and actually help are the normal "triggers" like chocolate and sugar really helps my head.

I tend to get headaches all the time though, sort of in betweeen the migraines... constant pain which grinds you down so much >.> My doc can't explain it which is lovely and helpful lol
Beware my friends, as you pass by
As you are now so once was I
As I'm now so you must be
Prepare my friends to follow me
/Mary Jane - Megadeth/

agsiul
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Re: Getting diagnosed

Post by agsiul » Thu May 26, 2011 7:12 pm

I would really look into Raynauds so because all of this is really familiar....I'm not supposed to eat cheese or chocolate but that is just as much for work as it puts a lot of strain on the voice but like you I don't get migraines from them. Maybe over a couple of months I'd feel a bit mucousy and I suppose if I kept eating the stuff I'd eventually get one but I have a cousin who would get one from just looking at chocolate. My ears and face would be extreemely cold and it would feel like my face was rotting on the inside....no idea where I got that idea but it's what I picture....also I don't know if I mentioned the sort of cramp I'd get in my face where my chin would fall out and I'd have to masage it back in place....really freaky and very painful...caussed again by the could and me yawning....do you get severe pain from the could anywhere else. Would your hands or legs/feet shut down in the cold? If your hands were cold would they get really red and blue and number. If you were to press one of them would it take a long time for the blood to get back in to bring back colour. There can be varying degrees of it. I'm on the highest medication the GP can give but other people would be on higher doeses...the GP told me that the medication is also working as a preventative for the migraines....figured that out when I ran out! ](*,) in the middle of the coldest time in winter....oh boy...so sick....so stupid...nearly made the same mistake again this year. Doh!

Loki
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Location: Birmingham

Re: Getting diagnosed

Post by Loki » Wed Jun 01, 2011 10:56 am

Well I'm finally seeing a doc on Friday (Mines is in Norway ](*,) ) and yeah I hate that horrid pain in the jaw thing. If I yawn it hurts like hell.

I tend to get cold really fast (Drives the partnet mad) My hands get ice cold just from typing on a computer or using a mouse for an extended period of time. I tend to wear jumpers and have lots of duvets to bed too... I'm just like a walking ice cube I think.

Might have to nudge this temp doc in that direction I think...
Beware my friends, as you pass by
As you are now so once was I
As I'm now so you must be
Prepare my friends to follow me
/Mary Jane - Megadeth/

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