Figured I'd start a thread and just put everything in it rather than cluttering up other threads.
So. Cross-posted from Facebook etc.
"Things may be looking up.
At the GP practice I am registered with, there are three permanent partners and usually several temporary doctors (and the nurses, ofc). I was seeing one of the temporary docs, who I think may have moved on now. She was the first person who I had spoken to there who seemed to be sympathetic - the others told me "we don't normally diagnose adults" and wouldn't tell me anything different. After a few goes, Dr Harker seemed a bit more receptive, and referred me to a learning disabilities psychiatrist, which sadly was a mistake on her part, because that was a service for mentally retarded adults, not adults with learning difficulties. Nasty setback, very distressing since I had a lot of hope for that.
Recently, I ran into my second supportive GP. He is a permanent partner at the practice, so why I didn't go through him in my previous pestering attempts, I'm not quite sure. Anyway, I asked him about it because he does acupuncture on me, so I figured he might be less black and white about things. It appears that that is true. When I spoke to him about dyspraxia, he immediately pulled up a webpage on it and had a brief look. I think I probably managed to express myself quite well with him, and I thought I made a very good case as to why a diagnosis would be helpful, and was able to explain the difficulties I have without getting over-emotional about it. This was over a few appointments - I would tend to mention it when I was there for repeat prescriptions and stuff.
Turns out, he works at the PCT as well as at the surgery, so he knows of all the specialists in the area. So he told me that he would have a look around, try and find somebody who was able to look into this, since dyspraxia is quite a specialist area. Most people know what dyslexia is, fewer know about dyspraxia. It's a common problem for adult dyspraxics, according to what I have read, and what similarly-affected adults have said.
So I left that with him for a bit. Then I began to investigate drugs, particularly drugs that have a stimulant-type effect. Obviously everyone knows that stimulants can be prescribed for ADHD. I don't necessarily think I have ADHD, but if you look down the list of innattentive symptoms it is rather like looking in a mirror, and it's certainly not a list of symptoms that a 'normal' person would be able to find in themselves. Not ALL of them, and not to the extent I have them. There could also be a good case for me having a few of the impulsive/hyperactive symptoms as a child. Having said that, that sort of bahaviour isn't uncommon in non-ADHD children and there were other contributing factors to it. Plus, a lot of the innattentive symptoms of ADHD are also symptoms of dyspraxia - there is a a certain amount of crossover with dyslexia/dyspraxia/ADHD. So, I do not necessarily think I have that, but even so, I have the innattentive symptoms, so I wondered about ADHD medication.
Stimulants are a bit alarming, but another drug did come to my attention, which is modafinil. Semes to work like a stimulant - affects noradrenaline and dopamine. Not addictive, and helps with a lot of things, seemingly - it's a treatment for narcolepsy, so it helps with daytime sleepiness, it also appears to improve working memory, which I struggle with, has been prescribed for ADHD and apparently shows promise in the treatment of depression. So. I thought, "hmmm" and talked to the doctor about it. He said he needed to think about it, as it's a relatively new drug. Which brings us to our conversation today.
Rang him up, asked him about modafinil again. He said he wasn't keen. He's spoken to an advisor about it. He would be a bit wary of giving it to me because there isn't a great deal known about the long-term effects, as it's new. He would also be concerned at not prescribing it for the condition it's supposed to be prescribed for, which is narcolepsy (it's pretty common to prescribe medicines not for their original purpose, but since this is a new drug, the evidence isn't as strong for other conditions). Plus, it's expensive. He said he could prescribe it, but he would rather not.
So, then what I did was tell him about Vicky. My fabulous friend Vicky, who had a word with her retired medical professional parents, and asked them about me and about dyspraxia. Their professional advice was for me not to be referred to a psychologist (which I thought I needed but evidently not!) and instead see a neurologist for a neurological assessment. So I told him that. He instantly came up with two he knows in York (plus a specialist in epilepsy, which he mentioned and then disregarded), and suggested one more than the other due to his open-mindedness, which sounded good to me. [He also said that if the neurologist then wanted to give me modafinil, that would be absolutely fine] He said he could write a letter to this guy stating what was needed, and it was possible that he'd get a letter back saying he couldn't do it, in which case we'd need to look at Leeds. He said:
Doc: So, would you like to go down this route?
Me, slightly dazed: I would like to go down *a* route. I have never even been ON a route before. You're the first one who's done something helpful...
Doc: Well, I haven't done anything yet!
So, that's where I am at now. He will send a letter off. If the neuro guy says he can look at this, I will get a letter back telling me who to ring to make an appointment. If the guy says he can't, then Dr Geddes will contact me to discuss specialists further afield. I told Geddes that I had reports from an occupational therapist from when I was a child, and an educational psychology report from secondary school, which he thought could be helpful to look out and send him copies. So I will be doing that.
I am currently cautiously optimistic, I think. Very cautious. I don't want to be hurt again. It was fortunate that my dad was with me after that terrible crushing disappointment of the learning disibilities psychiatrist. I was so devastated by that. It might not have been entirely healthy for me to have been on my own."
My fight for NHS assessment - babooshka2002
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babooshka2002
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babooshka2002
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Re: My fight for NHS assessment - babooshka2002
I have my neuro appointment in two hours at the local hospital. ARGH!
I am trying so hard not to hope for anything, but it's incredibly hard not to hope a little. I wrote them a letter explaining why I need a diagnosis for my learning difficulty - it's so much easier to lay it out logically in text rather than have to remember it. I asked my GP to send it on several weeks ago, along with a few reports - a "Full Team Assessment" from when I was 2, (which sounds a lot more impressive than it is) an Educational Psychology report from my school when I was 14, two occupational therapy reports from when I was 10/11 and an occupational therapy assessment from when I was 13. Also, a letter from a doctor in Community Child Health, and a letter from my old History teacher at school. Plus, I filled in a long list of questions about my difficulties (which prints out as 10 pages) and some of the same questions answered by my mother about me.
Several of these reports will be in my medical file, but not all of them and my medical file is very large. Most of the stuff in there will be to do with my skeleton (I have severe bilateral flat feet, a left-sided tarsal coalition, a kyphosis and possibly a mildly dodgy pelvis). I thought I would make it easier for the neurologist and I wanted to present them with the evidence that demonstrates that there have always been difficulties. The type of difficulties which I face can potentially be caused by head injuries - I would rather the neurologist eliminated that as a possibility asap - I'm certain that my problems were there from birth and not acquired later on.
I have made it very clear that not knowing what my problem is is a significant factor in my depression. That's me being crafty, although it is true too. Doctors keep saying to me, we don't usually diagnose adults. So I thought, ok fine. The NHS isn't that invested in diagnosing adult learning difficulties unless the adult in question is either completely illiterate or mentally retarded. I get that. It's a matter of weighing things up and resources are not unlimited. But the NHS DOES care about adult mental health and if I can make them see how much it affects me, then they might want to help. So that was why I started to focus on the mental health side of it. It's not the only reason, there are other sound logical reasons why I need a diagnosis, but the mental health thing is something that the NHS really want to help people in general with.
Still, I do wonder if the neuro will have read all this stuff. They will have other patients and I did send a lot. So I've printed it all out twice, to take with me. This is so that I will have a copy to refer to and so will the neuro, if he or she hasn't read it.
Another thing that made me a little nervous was getting a letter saying "Oh hai there! You iz under the care of Dr Duffey". It then went on to say that I might not actually see Dr Duffey, I might see a registrar or another doctor instead. My dad informs me that this is perfectly normal proceedure with consultants, but it did alarm me a bit because I thought, my GP referred me to a person who he thought would be open to the idea of diagnosing an adult with a specific learning difficulty, rather than going with the parrot-fashion "not usually diagnosing adults". But if I'm seeing someone else entirely it's a bit arg. I said this to Dad - she pointed out that any registrars or senior house officers working under Duffey are likely to be young and likely to be open-minded anyway. It's a good point.
Must get ready. I'm not going to be late for this, no way, no how.
I am trying so hard not to hope for anything, but it's incredibly hard not to hope a little. I wrote them a letter explaining why I need a diagnosis for my learning difficulty - it's so much easier to lay it out logically in text rather than have to remember it. I asked my GP to send it on several weeks ago, along with a few reports - a "Full Team Assessment" from when I was 2, (which sounds a lot more impressive than it is) an Educational Psychology report from my school when I was 14, two occupational therapy reports from when I was 10/11 and an occupational therapy assessment from when I was 13. Also, a letter from a doctor in Community Child Health, and a letter from my old History teacher at school. Plus, I filled in a long list of questions about my difficulties (which prints out as 10 pages) and some of the same questions answered by my mother about me.
Several of these reports will be in my medical file, but not all of them and my medical file is very large. Most of the stuff in there will be to do with my skeleton (I have severe bilateral flat feet, a left-sided tarsal coalition, a kyphosis and possibly a mildly dodgy pelvis). I thought I would make it easier for the neurologist and I wanted to present them with the evidence that demonstrates that there have always been difficulties. The type of difficulties which I face can potentially be caused by head injuries - I would rather the neurologist eliminated that as a possibility asap - I'm certain that my problems were there from birth and not acquired later on.
I have made it very clear that not knowing what my problem is is a significant factor in my depression. That's me being crafty, although it is true too. Doctors keep saying to me, we don't usually diagnose adults. So I thought, ok fine. The NHS isn't that invested in diagnosing adult learning difficulties unless the adult in question is either completely illiterate or mentally retarded. I get that. It's a matter of weighing things up and resources are not unlimited. But the NHS DOES care about adult mental health and if I can make them see how much it affects me, then they might want to help. So that was why I started to focus on the mental health side of it. It's not the only reason, there are other sound logical reasons why I need a diagnosis, but the mental health thing is something that the NHS really want to help people in general with.
Still, I do wonder if the neuro will have read all this stuff. They will have other patients and I did send a lot. So I've printed it all out twice, to take with me. This is so that I will have a copy to refer to and so will the neuro, if he or she hasn't read it.
Another thing that made me a little nervous was getting a letter saying "Oh hai there! You iz under the care of Dr Duffey". It then went on to say that I might not actually see Dr Duffey, I might see a registrar or another doctor instead. My dad informs me that this is perfectly normal proceedure with consultants, but it did alarm me a bit because I thought, my GP referred me to a person who he thought would be open to the idea of diagnosing an adult with a specific learning difficulty, rather than going with the parrot-fashion "not usually diagnosing adults". But if I'm seeing someone else entirely it's a bit arg. I said this to Dad - she pointed out that any registrars or senior house officers working under Duffey are likely to be young and likely to be open-minded anyway. It's a good point.
Must get ready. I'm not going to be late for this, no way, no how.
Re: My fight for NHS assessment - babooshka2002
Good luck!!! Let us know how it went, I was diagnosed by a neurologist so it can be donebabooshka2002 wrote:I have my neuro appointment in two hours at the local hospital. ARGH!
I am trying so hard not to hope for anything, but it's incredibly hard not to hope a little. I wrote them a letter explaining why I need a diagnosis for my learning difficulty - it's so much easier to lay it out logically in text rather than have to remember it. I asked my GP to send it on several weeks ago, along with a few reports - a "Full Team Assessment" from when I was 2, (which sounds a lot more impressive than it is) an Educational Psychology report from my school when I was 14, two occupational therapy reports from when I was 10/11 and an occupational therapy assessment from when I was 13. Also, a letter from a doctor in Community Child Health, and a letter from my old History teacher at school. Plus, I filled in a long list of questions about my difficulties (which prints out as 10 pages) and some of the same questions answered by my mother about me.
Several of these reports will be in my medical file, but not all of them and my medical file is very large. Most of the stuff in there will be to do with my skeleton (I have severe bilateral flat feet, a left-sided tarsal coalition, a kyphosis and possibly a mildly dodgy pelvis). I thought I would make it easier for the neurologist and I wanted to present them with the evidence that demonstrates that there have always been difficulties. The type of difficulties which I face can potentially be caused by head injuries - I would rather the neurologist eliminated that as a possibility asap - I'm certain that my problems were there from birth and not acquired later on.
I have made it very clear that not knowing what my problem is is a significant factor in my depression. That's me being crafty, although it is true too. Doctors keep saying to me, we don't usually diagnose adults. So I thought, ok fine. The NHS isn't that invested in diagnosing adult learning difficulties unless the adult in question is either completely illiterate or mentally retarded. I get that. It's a matter of weighing things up and resources are not unlimited. But the NHS DOES care about adult mental health and if I can make them see how much it affects me, then they might want to help. So that was why I started to focus on the mental health side of it. It's not the only reason, there are other sound logical reasons why I need a diagnosis, but the mental health thing is something that the NHS really want to help people in general with.
Still, I do wonder if the neuro will have read all this stuff. They will have other patients and I did send a lot. So I've printed it all out twice, to take with me. This is so that I will have a copy to refer to and so will the neuro, if he or she hasn't read it.
Another thing that made me a little nervous was getting a letter saying "Oh hai there! You iz under the care of Dr Duffey". It then went on to say that I might not actually see Dr Duffey, I might see a registrar or another doctor instead. My dad informs me that this is perfectly normal proceedure with consultants, but it did alarm me a bit because I thought, my GP referred me to a person who he thought would be open to the idea of diagnosing an adult with a specific learning difficulty, rather than going with the parrot-fashion "not usually diagnosing adults". But if I'm seeing someone else entirely it's a bit arg. I said this to Dad - she pointed out that any registrars or senior house officers working under Duffey are likely to be young and likely to be open-minded anyway. It's a good point.
Must get ready. I'm not going to be late for this, no way, no how.
ps: mine diagnosed me but didn't tell me (made it sound like he would officially diagnose me when I see him again in July) but when I went to the Dr about a week later I was told he had diagnosed me so it's worth checking back with your GP in a week or so as by then he should have received a letter back from the neurologist to explain the findings.
Dyspraxia - Dx Jan 2010, borderline ASD as well plus strong Dyscalculia overlap.
Fibromyalgia - Dx Jan 2011.
Hypermobility - Dx April 2011
Willis-Ekbom Disease - Dx November 2011
I also have Eczema, Rosacea and Trichitollomania. Oh joy
Fibromyalgia - Dx Jan 2011.
Hypermobility - Dx April 2011
Willis-Ekbom Disease - Dx November 2011
I also have Eczema, Rosacea and Trichitollomania. Oh joy
Re: My fight for NHS assessment - babooshka2002
pps: I answered some questions about my development too (the ones on here as developmental questionnaire) and mine was also ten pages long!
Dyspraxia - Dx Jan 2010, borderline ASD as well plus strong Dyscalculia overlap.
Fibromyalgia - Dx Jan 2011.
Hypermobility - Dx April 2011
Willis-Ekbom Disease - Dx November 2011
I also have Eczema, Rosacea and Trichitollomania. Oh joy
Fibromyalgia - Dx Jan 2011.
Hypermobility - Dx April 2011
Willis-Ekbom Disease - Dx November 2011
I also have Eczema, Rosacea and Trichitollomania. Oh joy
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babooshka2002
- Regular Poster
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- Joined: Sun Feb 24, 2008 11:17 pm
Re: My fight for NHS assessment - babooshka2002
My appointment was fairly short. Dr Duffey (I did see him in the end) apologised for that and made mild glaring faces while talking about secretaries.
First question he asked me was, are you left-handed or right-handed? I said that was an extremely good question and gave him a long list of stuff I do with each hand.
So, he said, you want a diagnosis- what are you hoping to be diagnosed with? I said that I thought it would be dreadfully rude of me to tell a professional what he was supposed to do - I said that I knew what I wanted but he was the professional, not me.
He said that he understood that, but would I tell him anyway. So I said, dyspraxia and possibly ADHD.
Then we had a slightly heated discussion in which he announced that dyspraxia was not a condition. Well ACTUALLY, I said, plenty of people have been diagnosed with dyspraxia. I know people who have been. Well, he said. No. Tuberculosis is a condition. Dyspraxia is a symptom of inability to control movements well and can be caused by a whole bunch of things. Like dyslexia, which isn't a condition either. To say someone has dyslexia is like saying someone is yellow. It doesn't tell you anything.
I gave him a frowny look. Look, he said, I CANNOT use that word to describe a condition. It's like ME, which stands for myalgic encephalomyelitis - I hate that too, because there is never any observable evidence of encephalomyelitis whatsoever.
After some more argy bargy we agreed to disagree and established that he was fine with the term "dyspraxic" as an adjective, but he couldn't diagnose something with the condition "dyspraxia" because that was a symptom. Well this is quite clearly danglies but that's ok, it doesn't stop me from being diagnosed as "dyspraxic", which would still satisfy me.
He looked at the evidence that I had provded him with (which he had already read) and said that there was very clear evidence of clumsiness and co-ordination problems stretching way back, but he'd have me examined anyway at a day clinic. He also said he'd send me for a brain scan and said that I'd need to see a psychiatrist to ask about the ADHD - he said he'd send a letter back to my GP asking about referring me to said psychiatrist.
While about to leave, I apologised for being annoying. He said, you weren't annoying, but I was probably annoying. I said, well you were a bit, actually. I'll have to look up dyspraxia again. He said, you won't find anything new and you'll still disagree with me. I said, but but, if you're right, then I must be wrong and I want to find out. Nope he said, you're not 'wrong', I'm just anally retentive. Heh, I said. Well I guess anally retentive isn't a bad thing to be, in medicine.
So, we parted on good terms and I am moving further down a path, which makes me very happy. :-) Even if the neurologist is a slight bit of a berk.
EDIT: Hahahaha! My swear word was changed to "danglies", how cute is that?! This forum rocks. XD I wasn't even aware of it as a swear word - obviously I know it is really but I use it so much that I had forgotten. I'll have to remember that. :-)
EDIT 2: http://www.bbc.co.uk/health/conditions/dyspraxia2.shtml
http://www.dyspraxiafoundation.org.uk/s ... mptoms.php
http://en.wikipedia.org/wiki/Developmental_dyspraxia
http://www.nhs.uk/conditions/Dyspraxia- ... ction.aspx
Yes, it can be called Developmental Co-ordination Disorder in medical circles, but Dyspraxia does TOO exist as a disorder, so there. It's another name for it, innit. *loud wet raspberry*
First question he asked me was, are you left-handed or right-handed? I said that was an extremely good question and gave him a long list of stuff I do with each hand.
So, he said, you want a diagnosis- what are you hoping to be diagnosed with? I said that I thought it would be dreadfully rude of me to tell a professional what he was supposed to do - I said that I knew what I wanted but he was the professional, not me.
He said that he understood that, but would I tell him anyway. So I said, dyspraxia and possibly ADHD.
Then we had a slightly heated discussion in which he announced that dyspraxia was not a condition. Well ACTUALLY, I said, plenty of people have been diagnosed with dyspraxia. I know people who have been. Well, he said. No. Tuberculosis is a condition. Dyspraxia is a symptom of inability to control movements well and can be caused by a whole bunch of things. Like dyslexia, which isn't a condition either. To say someone has dyslexia is like saying someone is yellow. It doesn't tell you anything.
I gave him a frowny look. Look, he said, I CANNOT use that word to describe a condition. It's like ME, which stands for myalgic encephalomyelitis - I hate that too, because there is never any observable evidence of encephalomyelitis whatsoever.
After some more argy bargy we agreed to disagree and established that he was fine with the term "dyspraxic" as an adjective, but he couldn't diagnose something with the condition "dyspraxia" because that was a symptom. Well this is quite clearly danglies but that's ok, it doesn't stop me from being diagnosed as "dyspraxic", which would still satisfy me.
He looked at the evidence that I had provded him with (which he had already read) and said that there was very clear evidence of clumsiness and co-ordination problems stretching way back, but he'd have me examined anyway at a day clinic. He also said he'd send me for a brain scan and said that I'd need to see a psychiatrist to ask about the ADHD - he said he'd send a letter back to my GP asking about referring me to said psychiatrist.
While about to leave, I apologised for being annoying. He said, you weren't annoying, but I was probably annoying. I said, well you were a bit, actually. I'll have to look up dyspraxia again. He said, you won't find anything new and you'll still disagree with me. I said, but but, if you're right, then I must be wrong and I want to find out. Nope he said, you're not 'wrong', I'm just anally retentive. Heh, I said. Well I guess anally retentive isn't a bad thing to be, in medicine.
So, we parted on good terms and I am moving further down a path, which makes me very happy. :-) Even if the neurologist is a slight bit of a berk.
EDIT: Hahahaha! My swear word was changed to "danglies", how cute is that?! This forum rocks. XD I wasn't even aware of it as a swear word - obviously I know it is really but I use it so much that I had forgotten. I'll have to remember that. :-)
EDIT 2: http://www.bbc.co.uk/health/conditions/dyspraxia2.shtml
http://www.dyspraxiafoundation.org.uk/s ... mptoms.php
http://en.wikipedia.org/wiki/Developmental_dyspraxia
http://www.nhs.uk/conditions/Dyspraxia- ... ction.aspx
Yes, it can be called Developmental Co-ordination Disorder in medical circles, but Dyspraxia does TOO exist as a disorder, so there. It's another name for it, innit. *loud wet raspberry*
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babooshka2002
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Re: My fight for NHS assessment - babooshka2002
Things are proceeding with neurology a lot quicker than I had expected! I am impressed.
Next week I have my neurological assessment with Dr Duffey, I think - the letter says "full examination" so I suspect that is what is meant. Maybe he will test things like reflexes, balance, co-ordination, climbing stairs, that sort of thing.
Then, next Saturday I have my MRI brain scan, which I certainly wasn't expecting this quickly. I've had an MRI scan of my feet so I know what to expect with that, though I suspect the fact that they are scanning the head will make it rather less pleasant - it'll be rather like being inside a box being hit with a hammer, though you do get headphones to try and block that sound out, and you can take music along for them to play to you as well.
Note: I have already had a letter from the neurologist (posted another thread about that) which said the following.
"I have had the opportunity to read through your notes quite carefully. There are several very detailed reports contained within the notes which document developmental abnormality. As you know, there is documentation of impaired concentration and organisational skills and impaired processing of visual material, but exceptional literacy and verbal skills. With regards to the physical state, there is documentation of delayed motor milestones and hypotonia in earlier life with later recognition of joint laxity, kyphoscoliosis and coalition of the talocalcaneal joints. To my mind this is rather more than one would include within the term dyspraxia and I think that one will have to accept that there is an unspecified developmental abnormality present with cognitive, motor and physical components. I do not expect that a more specific diagnosis will be forthcoming, particularly given the investigations undertaken in childhood. I have to admit that there are a number of children in whom there is clearly abnormality present who do not attract a specific diagnosis. Use of the phrase "developmental abnormality" would perhaps be the simplest solution.
I am happy to discuss these matters with you when we next meet and also discuss with you the MRI scan of your brain once it has been performed."
He does not believe in dyspraxia as a condition, we have already established that. He only sees it as a physical problem and he does not appreciate that he is describing precisely the symptoms of dyspraxia there, apart from the skeletal problems.
What I have decided to do it print out a number of symptom lists from reputable websites and present them to him. If he still insists on covering his eyes and screaming "lalalala, I can't see anything!" I shall return to my GP, explain the situation and ask to be sent to a clinical psychologist instead.
PS. This may sound awfully grumpy and impolite, but really, this is the closest I have come to an answer and I will fight for this - I won't be a good little patient and sit down and shut up, like some of my friends think I should do. I think he is wrong and so I will argue it.
Next week I have my neurological assessment with Dr Duffey, I think - the letter says "full examination" so I suspect that is what is meant. Maybe he will test things like reflexes, balance, co-ordination, climbing stairs, that sort of thing.
Then, next Saturday I have my MRI brain scan, which I certainly wasn't expecting this quickly. I've had an MRI scan of my feet so I know what to expect with that, though I suspect the fact that they are scanning the head will make it rather less pleasant - it'll be rather like being inside a box being hit with a hammer, though you do get headphones to try and block that sound out, and you can take music along for them to play to you as well.
Note: I have already had a letter from the neurologist (posted another thread about that) which said the following.
"I have had the opportunity to read through your notes quite carefully. There are several very detailed reports contained within the notes which document developmental abnormality. As you know, there is documentation of impaired concentration and organisational skills and impaired processing of visual material, but exceptional literacy and verbal skills. With regards to the physical state, there is documentation of delayed motor milestones and hypotonia in earlier life with later recognition of joint laxity, kyphoscoliosis and coalition of the talocalcaneal joints. To my mind this is rather more than one would include within the term dyspraxia and I think that one will have to accept that there is an unspecified developmental abnormality present with cognitive, motor and physical components. I do not expect that a more specific diagnosis will be forthcoming, particularly given the investigations undertaken in childhood. I have to admit that there are a number of children in whom there is clearly abnormality present who do not attract a specific diagnosis. Use of the phrase "developmental abnormality" would perhaps be the simplest solution.
I am happy to discuss these matters with you when we next meet and also discuss with you the MRI scan of your brain once it has been performed."
He does not believe in dyspraxia as a condition, we have already established that. He only sees it as a physical problem and he does not appreciate that he is describing precisely the symptoms of dyspraxia there, apart from the skeletal problems.
What I have decided to do it print out a number of symptom lists from reputable websites and present them to him. If he still insists on covering his eyes and screaming "lalalala, I can't see anything!" I shall return to my GP, explain the situation and ask to be sent to a clinical psychologist instead.
PS. This may sound awfully grumpy and impolite, but really, this is the closest I have come to an answer and I will fight for this - I won't be a good little patient and sit down and shut up, like some of my friends think I should do. I think he is wrong and so I will argue it.
Re: My fight for NHS assessment - babooshka2002
Best of luck, and hope the outcome is what your looking for.
Mike
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babooshka2002
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Re: My fight for NHS assessment - babooshka2002
Well, I have had my neurological assessment - he checked lots of reflexes and my muscle strength and joint extensions - he says I am hypotonic, I definitely have lax joints (both of which I knew), I'm hyper reflexive in the right foot apparently (very responsive to the hammer, more so than normal, but he just said that as an observation, it doesn't necessarily mean anything) and I have a slight tremor.
The really interesting bit was him examining my spine, actually. I told him that I had never been talked to about my spinal curve - I found out by chance because my orthopedic consultant wrote about it in a letter I asked him to write for benefit - up until then I had not heard of it, though I knew my back was wrong. Anyway, the consultant said, kyphosis. In his letter, Dr Duffey wrote kyphoscoliosis.
Me: This kyphoscoliosis thing. Mr Mclaren wrote kyphosis and you've written kyphoscoliosis.
Him: I went through all your medical notes and jotted things down - kyphoscoliosis was one of the things I found.
Me: Mmm, and thank you for doing that by the way, it's really amazing. But, kyphoscoliosis - I know what a kyphosis is and I know what a scoliosis is. Kyphoscoliosis seems to imply to my admittedly non-medical brain, deviation along both planes. Am I way off here?
Him: No, that's absolutely right, deviation along both planes.
Me: I have deviation along both planes? I never knew that... though of course I never knew I had a kyphosis anyway, never had a consultation about it or anything so I wasn't given that info.
[Duffey looks at my spine]
Him: This is a significant lordosis - I'll explain that because I know you're about to ask - a lordosis is when the spine is abnormally curved inward, as it is here in your lumbar region. The kyphosis is in your thoracic region and the kyphosis means it is abnormally curved outwards. A scoliosis is side to side.
So, it appears my spine is wonky in both directions, though any scoliosis I have must be very very mild because it's not visible. The front to back curve is obvious, but nobody has ever pointed out a side to side curve before. Perhaps it is only evident on X-rays.
I really like Dr Duffey. We had an excellent, lively discussion about his problem with dyspraxia and I made it clear I didn't dislike him at all by just telling him straight out. He does understand where I am coming from, but he can't go there, it's just not possible. I also understand where he is coming from, and really, I am very fussy with definitions of things too and I can understand that he just can't do that. Neurologically speaking, dyspraxia is a problem with movement, though it's a little more complicated than that (I mean the neurological definition of dyspraxia is slightly more complicated). Anyway, the point is that the condition that the public calls dyspraxia is not what a neurologist will call it. That's what it seems like. So again, we agreed to disagree on it.
I am absolutely NOT going to complain about him. That man scoured through my entire, very large medical file for me and made notes on what he found. He is not an arsehole in any way, shape or form. Also, he said he thought me reading my medical file would be a good thing. I was like ...OMG YES PLEASE. I have wanted to read it for ages, but you have to go through 'proceedure' and give them money (though not much) and blarrgh. And he said, well I'll ask the Trust and hopefully it'll be ok, you can just come into the hospital, sit down and read it. Which is EXACTLY what I want to do.
Duffey said that it was absolutely clear from the notes that I had a lot of problems and he was surprised nobody had really tried to give me answers on stuff. He said if I needed any evidence for anything, he'd be happy to write a letter for me. He's already referred me to occupational therapy and he said he would ask the occupational therapist to include some dyspraxia-type tests in the assessment.
I said to him that from a practical point of view, it would be much better to know where my specific problems lay, because something I have noticed about people who have been diagnosed as having dyspraxia, they are all very different and their problems all need different approaches and different strategies depending on where the problem areas are.
I asked him about seeing a psychiatrist about ADHD symptoms. He said he thought I would be very disappointed on this because many psychiatrists do not believe in ADHD in adults, just in children. He did not think a psychiatrist would be helpful because of this. I asked him whether he knew of any psychiatrists who would be accepting of the existence of that diagnosis, he said he did not. Apparently his wife is a psychiatrist - that's very cool, a neurologist and psychiatrist being married. They must have really awesome conversations.
So! I am happy. :-)
The really interesting bit was him examining my spine, actually. I told him that I had never been talked to about my spinal curve - I found out by chance because my orthopedic consultant wrote about it in a letter I asked him to write for benefit - up until then I had not heard of it, though I knew my back was wrong. Anyway, the consultant said, kyphosis. In his letter, Dr Duffey wrote kyphoscoliosis.
Me: This kyphoscoliosis thing. Mr Mclaren wrote kyphosis and you've written kyphoscoliosis.
Him: I went through all your medical notes and jotted things down - kyphoscoliosis was one of the things I found.
Me: Mmm, and thank you for doing that by the way, it's really amazing. But, kyphoscoliosis - I know what a kyphosis is and I know what a scoliosis is. Kyphoscoliosis seems to imply to my admittedly non-medical brain, deviation along both planes. Am I way off here?
Him: No, that's absolutely right, deviation along both planes.
Me: I have deviation along both planes? I never knew that... though of course I never knew I had a kyphosis anyway, never had a consultation about it or anything so I wasn't given that info.
[Duffey looks at my spine]
Him: This is a significant lordosis - I'll explain that because I know you're about to ask - a lordosis is when the spine is abnormally curved inward, as it is here in your lumbar region. The kyphosis is in your thoracic region and the kyphosis means it is abnormally curved outwards. A scoliosis is side to side.
So, it appears my spine is wonky in both directions, though any scoliosis I have must be very very mild because it's not visible. The front to back curve is obvious, but nobody has ever pointed out a side to side curve before. Perhaps it is only evident on X-rays.
I really like Dr Duffey. We had an excellent, lively discussion about his problem with dyspraxia and I made it clear I didn't dislike him at all by just telling him straight out. He does understand where I am coming from, but he can't go there, it's just not possible. I also understand where he is coming from, and really, I am very fussy with definitions of things too and I can understand that he just can't do that. Neurologically speaking, dyspraxia is a problem with movement, though it's a little more complicated than that (I mean the neurological definition of dyspraxia is slightly more complicated). Anyway, the point is that the condition that the public calls dyspraxia is not what a neurologist will call it. That's what it seems like. So again, we agreed to disagree on it.
I am absolutely NOT going to complain about him. That man scoured through my entire, very large medical file for me and made notes on what he found. He is not an arsehole in any way, shape or form. Also, he said he thought me reading my medical file would be a good thing. I was like ...OMG YES PLEASE. I have wanted to read it for ages, but you have to go through 'proceedure' and give them money (though not much) and blarrgh. And he said, well I'll ask the Trust and hopefully it'll be ok, you can just come into the hospital, sit down and read it. Which is EXACTLY what I want to do.
Duffey said that it was absolutely clear from the notes that I had a lot of problems and he was surprised nobody had really tried to give me answers on stuff. He said if I needed any evidence for anything, he'd be happy to write a letter for me. He's already referred me to occupational therapy and he said he would ask the occupational therapist to include some dyspraxia-type tests in the assessment.
I said to him that from a practical point of view, it would be much better to know where my specific problems lay, because something I have noticed about people who have been diagnosed as having dyspraxia, they are all very different and their problems all need different approaches and different strategies depending on where the problem areas are.
I asked him about seeing a psychiatrist about ADHD symptoms. He said he thought I would be very disappointed on this because many psychiatrists do not believe in ADHD in adults, just in children. He did not think a psychiatrist would be helpful because of this. I asked him whether he knew of any psychiatrists who would be accepting of the existence of that diagnosis, he said he did not. Apparently his wife is a psychiatrist - that's very cool, a neurologist and psychiatrist being married. They must have really awesome conversations.
So! I am happy. :-)
Re: My fight for NHS assessment - babooshka2002
best of luck on viewing your hospital records, might be an idea to take someone with you to read them, and don't be scared about asking for photo-copies of things if you want to read more in-depth at a later stage.
I have only seen my GP's medical records, so let us know how you go about viewing hospital records. and be prepared if your medical records are as big as mine, I mean bursting at the seems when I was 15, then it will take quite some reading!!
I have only seen my GP's medical records, so let us know how you go about viewing hospital records. and be prepared if your medical records are as big as mine, I mean bursting at the seems when I was 15, then it will take quite some reading!!
Mike
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babooshka2002
- Regular Poster
- Posts: 52
- Joined: Sun Feb 24, 2008 11:17 pm
Re: My fight for NHS assessment - babooshka2002
So.
The Occupational Therapist came round today. I saw her at the hospital last week and she wanted to come and see me in my home as well, which I was very alarmed by - I said "Are you sure you want to come round? It's a horrible mess, I'll have to tidy up, arrgh!"
She told me not to make any effort beyond what I would do normally, because she had to see it how it was, she had to see the reality. I thought this made a lot of sense.
So, she came round today. First thing she did was go through the results of the test she performed last week. She said that I fit one part of one type of dyspraxia - there's ideo-motor dyspraxia and ideational dyspraxia. Struggling with miming the action of an object without having the object in my hand, is associated with one of these but I can't remember which one. Ideo-motor, I think. So I do have ideo-motor problems - symptoms of what is called ideo-motor dyspraxia.
However, the fact that when she asked me to mime waving goodbye and brushing my teeth and things like that, I found it totally easy and not a problem at all, indicated not-dyspraxia. That's called ideational dyspraxia, if someone can't make the action when they are asked "How would you wave goodbye?"
Or, they might be the other way round. Whatever - I have problems with one but not the other.
So, the fact that these two things are not present in me together, indicates that I do not have dyspraxia (and by the way, she has no trouble at all with the concept of dyspraxia as a collection of symptoms - that seems to be just a neurologist thing)
She said that I have some dyspraxic tendencies, and she understands I don't like that term, but that's what it is - I have some aspects of dyspraxia but not all of it, and I do certainly have a very dyspraxic history in terms of my childhood development, so me thinking I did have dyspraxia was not an unreasonable thing to think - for the non-medical person that I am, it was a reasonable theory based on the available evidence. Current evidence however, says different.
So what do I have? She said I most certainly have a problem of some sort with executive brain function.
http://en.wikipedia.org/wiki/Executive_functions
She has referred me to the neuropsychology department and has suggested a psychiatrist would be useful to see as well in order to try to get to the bottom of this. I think it'll be hard to do this, because from what I've read, it's quite possible for someone to be quite impaired in their everyday executive functions but still do very well on tests of executive function. Difficult to pin down.
She says there is definitely a problem, that much is obvious and she thinks I should have more tests. I will be seeing her again in the hopes of gaining help with learning how to organise myself better.
So, sadly I have to abandon my pet theory of dyspraxia. I liked it. It was a good one, it fit pretty well, but not well enough. I'm big enough to be able to say I was wrong though.
*huggles the dyspraxia theory, then releases it back into the wild*
In terms of new pets, I really have no idea, though I'm leaning towards ADHD more, or possibly Aspergers Syndrome, but I like ADHD much better. Much. I've liked ADHD ever since I read that ADHD kids can be clumsy in the same way dyspraxic kids can, and I certainly had MAHOOSIVE problems in that area when I was a bairn, which is why I liked dyspraxia since it's primarily a physical thing, or that's the most obvious thing about dyspraxia anyway - the physical clumsiness. But ADHD can include that too.
Still, getting a new pet may not be helpful for me. What I should do is just let the docs do their jobs and figure stuff out, let them find the pet from their position of knowing a lot more than I do. It's just... it's so important for me to have SOMETHING, so that I have something to say when people in a confused tone of voice ask me why I totally seem to be not listening to them, or why I've looked straight at them, smiled at them, clearly knowing there was a person there but not recognised them, or why I've forgotten something which they've told me a million times, or why I've just walked into a lamp post or randomly lurched drunkenly to the side for no reason at all, or just tried to put my furry rucksack in a bin, or not put my cheese away, or put it in the cereal cupboard, or put my keys in the washing machine (which thankfully nobody has ever witnessed, cos that would be totally humiliating) or failed to turn the oven off in someone else's house (done that a few times) or cycled the wrong way down a road and not realised it.
I would love to be able to say "Oh yeh, that's because I'm dyspraxic". But I can't.
Still, I am so intensely grateful that people are paying attention and helping me now - it's just.... beyond wonderful. I can honestly say that since Dr Geddes took me seriously and referred me to the neurologist, my depression has been greatly reduced. Greatly reduced. Still there, but oh, so much better. My head feels clearer and...lighter. Course, this now means that I'm back to my thoughts racing around like mad and fighting for supremacy, like molecules in a jug of hot water! When I'm depressed, those thoughts are significantly slower - there are still too many of them and they are still too loud, but they move slower so it's not quite as confusing. I wouldn't swap though, not for any money - racing thoughts with lightness, I'll take that any day over slower sluggish thoughts with heaviness and depression.
I'm also very happy to gain tidbits of information - ok, so I can't say I have dyspraxia, but I can say I'm under the care of neurology and I have problems with executive brain function. And people can't accuse me of making it up because I'm really seeing someone, and that has been said. Nobody can accuse me of making things up because I have too much time on my hands.
The Occupational Therapist came round today. I saw her at the hospital last week and she wanted to come and see me in my home as well, which I was very alarmed by - I said "Are you sure you want to come round? It's a horrible mess, I'll have to tidy up, arrgh!"
She told me not to make any effort beyond what I would do normally, because she had to see it how it was, she had to see the reality. I thought this made a lot of sense.
So, she came round today. First thing she did was go through the results of the test she performed last week. She said that I fit one part of one type of dyspraxia - there's ideo-motor dyspraxia and ideational dyspraxia. Struggling with miming the action of an object without having the object in my hand, is associated with one of these but I can't remember which one. Ideo-motor, I think. So I do have ideo-motor problems - symptoms of what is called ideo-motor dyspraxia.
However, the fact that when she asked me to mime waving goodbye and brushing my teeth and things like that, I found it totally easy and not a problem at all, indicated not-dyspraxia. That's called ideational dyspraxia, if someone can't make the action when they are asked "How would you wave goodbye?"
Or, they might be the other way round. Whatever - I have problems with one but not the other.
So, the fact that these two things are not present in me together, indicates that I do not have dyspraxia (and by the way, she has no trouble at all with the concept of dyspraxia as a collection of symptoms - that seems to be just a neurologist thing)
She said that I have some dyspraxic tendencies, and she understands I don't like that term, but that's what it is - I have some aspects of dyspraxia but not all of it, and I do certainly have a very dyspraxic history in terms of my childhood development, so me thinking I did have dyspraxia was not an unreasonable thing to think - for the non-medical person that I am, it was a reasonable theory based on the available evidence. Current evidence however, says different.
So what do I have? She said I most certainly have a problem of some sort with executive brain function.
http://en.wikipedia.org/wiki/Executive_functions
She has referred me to the neuropsychology department and has suggested a psychiatrist would be useful to see as well in order to try to get to the bottom of this. I think it'll be hard to do this, because from what I've read, it's quite possible for someone to be quite impaired in their everyday executive functions but still do very well on tests of executive function. Difficult to pin down.
She says there is definitely a problem, that much is obvious and she thinks I should have more tests. I will be seeing her again in the hopes of gaining help with learning how to organise myself better.
So, sadly I have to abandon my pet theory of dyspraxia. I liked it. It was a good one, it fit pretty well, but not well enough. I'm big enough to be able to say I was wrong though.
*huggles the dyspraxia theory, then releases it back into the wild*
In terms of new pets, I really have no idea, though I'm leaning towards ADHD more, or possibly Aspergers Syndrome, but I like ADHD much better. Much. I've liked ADHD ever since I read that ADHD kids can be clumsy in the same way dyspraxic kids can, and I certainly had MAHOOSIVE problems in that area when I was a bairn, which is why I liked dyspraxia since it's primarily a physical thing, or that's the most obvious thing about dyspraxia anyway - the physical clumsiness. But ADHD can include that too.
Still, getting a new pet may not be helpful for me. What I should do is just let the docs do their jobs and figure stuff out, let them find the pet from their position of knowing a lot more than I do. It's just... it's so important for me to have SOMETHING, so that I have something to say when people in a confused tone of voice ask me why I totally seem to be not listening to them, or why I've looked straight at them, smiled at them, clearly knowing there was a person there but not recognised them, or why I've forgotten something which they've told me a million times, or why I've just walked into a lamp post or randomly lurched drunkenly to the side for no reason at all, or just tried to put my furry rucksack in a bin, or not put my cheese away, or put it in the cereal cupboard, or put my keys in the washing machine (which thankfully nobody has ever witnessed, cos that would be totally humiliating) or failed to turn the oven off in someone else's house (done that a few times) or cycled the wrong way down a road and not realised it.
I would love to be able to say "Oh yeh, that's because I'm dyspraxic". But I can't.
Still, I am so intensely grateful that people are paying attention and helping me now - it's just.... beyond wonderful. I can honestly say that since Dr Geddes took me seriously and referred me to the neurologist, my depression has been greatly reduced. Greatly reduced. Still there, but oh, so much better. My head feels clearer and...lighter. Course, this now means that I'm back to my thoughts racing around like mad and fighting for supremacy, like molecules in a jug of hot water! When I'm depressed, those thoughts are significantly slower - there are still too many of them and they are still too loud, but they move slower so it's not quite as confusing. I wouldn't swap though, not for any money - racing thoughts with lightness, I'll take that any day over slower sluggish thoughts with heaviness and depression.
I'm also very happy to gain tidbits of information - ok, so I can't say I have dyspraxia, but I can say I'm under the care of neurology and I have problems with executive brain function. And people can't accuse me of making it up because I'm really seeing someone, and that has been said. Nobody can accuse me of making things up because I have too much time on my hands.
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babooshka2002
- Regular Poster
- Posts: 52
- Joined: Sun Feb 24, 2008 11:17 pm
Re: My fight for NHS assessment - babooshka2002
MRI SCAN RESULTS.
Doc: Hi, erm... I can't actually find it... who told you we had it?
Me: The secretary - she was faxing it through to you as we were speaking.
Doc: Ah, ok, I didn't realise it was a fax, I'll go and look in Reception.
*five minutes later*
Doc: No, I still can't find it.
Me: Erm... she said she'd address it to Dr Geddes, if that helps?
Doc. Hum. Maybe she had the wrong fax number. I'll ring you back.
*five minutes later*
Doc: Yes, found it, it was in his slot. It is literally a single line - completely normal brain appearance.
Me: Aha, well that's exactly what I expected! Thanks!
So there we are, as I thought - entirely normal. An fMRI might pick up interesting tings about blood flow and which side is more active, if there is anything unusual in terms of blood flow in different areas, but I don't know if it would and I didn't have one of them. I was told last week that I could expect an appointment with Dr Duffey in July (most likely - I'm pencilled in for July but all things vary, probably depends on how many urgent cases pop up), so I will discuss the possibility of an fMRI with him just out of interest, but I doubt it will be considered appropriate.
So! To sum up where we are now - I'm not fully dyspraxic but have some dyspraxic tendencies, I have problems with executive brain function (which is associated with a few psychiatric and developmental disorders including ADHD, autism, tourettes, OCD, depression, schizophrenia etc) and I'm hypotonic (chronically low muscle tone) hyper-reflexive in the right foot and I have a slight temor. I have a completely normal brain appearance.
In future, I am being referred to the department of neuropsychology, the occupational therapist wants me to have some complicated tests of executive function and also thinks that seeing a psychiatrist would be beneficial.
Doc: Hi, erm... I can't actually find it... who told you we had it?
Me: The secretary - she was faxing it through to you as we were speaking.
Doc: Ah, ok, I didn't realise it was a fax, I'll go and look in Reception.
*five minutes later*
Doc: No, I still can't find it.
Me: Erm... she said she'd address it to Dr Geddes, if that helps?
Doc. Hum. Maybe she had the wrong fax number. I'll ring you back.
*five minutes later*
Doc: Yes, found it, it was in his slot. It is literally a single line - completely normal brain appearance.
Me: Aha, well that's exactly what I expected! Thanks!
So there we are, as I thought - entirely normal. An fMRI might pick up interesting tings about blood flow and which side is more active, if there is anything unusual in terms of blood flow in different areas, but I don't know if it would and I didn't have one of them. I was told last week that I could expect an appointment with Dr Duffey in July (most likely - I'm pencilled in for July but all things vary, probably depends on how many urgent cases pop up), so I will discuss the possibility of an fMRI with him just out of interest, but I doubt it will be considered appropriate.
So! To sum up where we are now - I'm not fully dyspraxic but have some dyspraxic tendencies, I have problems with executive brain function (which is associated with a few psychiatric and developmental disorders including ADHD, autism, tourettes, OCD, depression, schizophrenia etc) and I'm hypotonic (chronically low muscle tone) hyper-reflexive in the right foot and I have a slight temor. I have a completely normal brain appearance.
In future, I am being referred to the department of neuropsychology, the occupational therapist wants me to have some complicated tests of executive function and also thinks that seeing a psychiatrist would be beneficial.