The Wrong Tests?
Posted 09 August 2008 - 07:08 AM
I'm asking about diagnostic tests generally, and about how diagnosis is done in the UK these days.
Does anyone know if a test that is 2 days in a video telemetry bed with EEG and NHG ( whats an NHG?) is the same or gives the same information as an overnight PSG and next day MSLT?
I know the video telemetry EEG gets used in hard to diagnose epilepsy and when they suspect psychosomatic seizures. Is it normal to use this test in narcolepsy without RBD?
I haven't checked but I think in the UK guidelines for diagnosis and management of narcolepsy it says that lumbar puncture for hypocretin levels, and HLA typing are definitely not to be used to diagnose or to rule out narcolepsy, or to contribute to diagnosis. My sleep doctor is saying they will definitely diagnose or rule out N.
If drs practiced by those guidelines I would be one of the ones - reporting EDS, uncontrollable sleeps and having obvious cataplexy over a long period of time - who would be diagnosed before any tests, and tests would be for giving extra info to help with treatment/management and research.
I know this just doesn't happen in practice and almost all of us are tested before diagnosis.
Those guidelines were written in 2002 and the research has moved fast since then - does anyone know of any update to the guidelines, or any change in attitude and practice in UK neurologists and sleep doctors about how dx is done?
I'd be fine with getting lumbar puncture and HLA typing tests done to add to the research data.
As far as I can tell, HLA typing and CSF hypocretin would be the wrong tests for everyone, for diagnosis. I got all symptoms of narcolepsy after brain injury, so I'm in the group of people where both these tests are more than normally likely to give false negatives if they are being used in diagnosis.
It would be good to hear about anyone elses experience of testing in the UK. Did any of you go private in the end?
Posted 09 August 2008 - 02:22 PM
Posted 10 August 2008 - 05:10 AM
Posted 10 August 2008 - 06:22 AM
I am still waiting for the Video psg that I should of had a couple of weeks ago, apparently the machine was broke and now the only to women that can work it are both on brievement leave, not the same family just a coinsidence the hspital said, couldn't give me a date for when they would be back.
Posted 10 August 2008 - 07:18 AM
Posted 10 August 2008 - 07:34 AM
I don't know about adult specialists, as problems with my daughter. I searched the internet to find the NHS hospital nearest to us that tested for N. (We are Cornwall, her specialist is London, at St Thomas Hospital, perhaps you could ring them?)
She had a two day video eeg and wires on her head, but that was not for N. It was to rule out other issues as you said. (Also sleep apnea, restless leg syndrome) Very long waiting list but worth the wait.
Can you try ringing Papworth Hospital and asking them the nearest hospial that tests for N. useing mslt in Adults?
I say Papworth because I have heard of them on the sleep program that was on last year. (Dr Schneerson?)
Good luck, all a bit of a lottery with the NHS.
Posted 11 August 2008 - 06:42 AM
How have things gone with treatment for your daughter? Have you found a good Dr?
I found some research that supports asking for a second opinion - why HLA and hypcretin can't positively diagnose, or exclude narcolepsy except where cataplexy is the most severe and observed by a dr that knows what they are looking at.
I'm probably going to have to take a loan and go for the private PSG, to use to try to get an nhs referral for a PSG plus MSLT, because homelessmess looms closer and I can't think how else to move it all forward. Never thought I'd use private medicine.
I wouldn't risk the debt, but I've had obvious typical cataplexy for 12?13? years, as well as all the rest, some from 16 years back. So I'm fairly sure N needs checked for and I'm not just endlessly diagnosis fishing to avoid my, em, inner conflicts and whatnots
Ta for listening,
any ideas welcome.
Posted 11 August 2008 - 02:46 PM
If you can find that on the internet, that maybe worth a call/email if going private.
We have had to fight incredibly hard to get the NHS to listen to us. My daughter is actually 6 today and since 3 1/2 huge problems. We found the right doctor in London, and got the referral.
We found that by finding the person we needed for narcolepsy testing and going to them first, asking ' what criteria do we need for a referral', we achieved the referral. We did our own research, and turned the key eventually.
My understanding is that the hypocretin test is only regarding the cataplexy. I thought the main clinical diagnosis in the UK is via the MSLT. I also thought that if a reputable sleep doctor could see (video evidence)it was cataplexy they could diagnos on that part alone.
Perhaps if you start asking at a reputable NHS sleep hospital they could advise where to go, depending on the part of the country you are.
We have found that useing the symptoms brings better results, as her EDS is terrible. This is what causes her main day to day problems. As she does not have a diagnosis of N. , we find medical evidence of EDs and how it affects her , to show to others why she is different.
Have you actually had a MSLT/PSG yet? Are you on medication?
Also we have changed local doctors several times to find one who actually wants to learn more , as previous ones were happy to leave her without taking outside advice.
Posted 11 August 2008 - 02:57 PM
I know the Edinburgh childrens hospital has a good sleep doctor for n. Dr Sameer Zuberi. Perhaps if you contact the hospital they can put you onto the adult testing , for Scotland.
London are good for our daughter, they always return our calls, they will retest her yearly via MSLT, and are clear that her medication does not 'make her better', only takes the edge off her eds. She will also have cognitive behavioural therapy for hh and sp, which should help. Also they are writing decent letters to outside agencies to help explain her condition.
Best wishes, stay strong , and keep researching.
Posted 12 August 2008 - 05:41 AM
I'm glad you found some good people to treat your daughter, and that they're going to keep assessing her regularly. I'm sorry its so hard while she's so wee. Have you come across stuff written by Prof Gregory Stores in Oxford? He writes lots of good stuff on children with N, and their needs, trying to persuade people to take it all more serious and to see how complex it can be. From reading what he wrote, I think he gets it, more than most. Some of his papers and articles are on google.
I've had no relevant tests, They've kept saying 'go away mad woman'. I've the mild fibro and blood sugar stuff too so the poor things get confused. I'd guess they haven't time to read research. Thanks for the information about the London place - I think they might be one of just a few that do the MSLT as well.
with me it's a sleep dr wanting to do these tests.
This thing about hypocretin and HLA tests being used when it can't diagnose or exclude, unless cataplexy is severe - so they are only useful in situation where tests are less needed - I think its happening because Drs are like the rest of us, and they get excited about having a new toy and want to play with it all the time and tell everyone about it.
Oh, I can tell I'm going to be sounding a bit ranty here - but I'm not angry, just reached a limit with these people.
It's partly from poor science writing in scientific papers - when they are talking about cataplexy and choosing the people to include in the research, lots of researchers use 'cataplexy' interchangeably with 'severe cataplexy ' 'typical cataplexy' 'true cataplexy' and about 4 other terms I can't remember just now. Some of these terms have values attached to them that aren't about the severity of the cataplexy, but imply the possibility/likelihood of malingering in those with less severe cataplexy. They use these words usually without defining them, and they use them interchangeably with just 'cataplexy' and without explaining that it is also typical and normal in N to have moderate and mild C, that's also easily positively identified when you know what you are looking at. I get the severe C, but less often than the moderate.
They go on to say these tests will positively diagnose or exclude narcolepsy with cataplexy.
And then some people, like my sleep dr, take it an absurd stage further and say these tests diagnose and exclude all narcolepsy.
I got research on these test with severe, moderate and mild C saying it's interesting, but pointless for diagnosis in mild to moderate C. But being able to read a scientific paper, even when that's been part of your working life, is a sure sign of mental illness in an ill person in this country. So I'm a bit stuffed, as far as the nhs is concerned.
thanks for all the ideas, and your kindness