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 11/05/2012 07:43
 

GP reluctant to refer for thorough sleep studies, despite excessive daytime sleepiness (14-18 on Epworth scale - is this not bad enough?) and sleep apnoea excluded by bringing a machine home from hospital to test it one night. Dreaming all night, exhausted all day, what does it take to get a referral? Are there any other routes to diagnosis, eg any current research studies to join?

Thanks for your suggestions, getting desperate.

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 11/05/2012 10:29
 

Be prepared for a very long wait if you are trying to get diagnosis from NHS means. I went private and for just under £2,000 I got my diagnosis (not narcolepsy) and full results of sleep studies. You will need overnight Polysomnography and Multiple Sleep Latency Testing the following day. If you can afford it, it is very worthwhile going private. Also get the private clinic to give you your diagnosis.....sometimes they just give you your results to take to your own doctor. Hope you get on well.

Andrea

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 11/05/2012 13:42
 

Thanks, interesting to see the cost - completely out of the question for us to go private for that amount. And I guess that explains the GP's reluctance too.

I am investigating various sleep research places to see if there are any suitable studies that might be useful, so if anyone knows any, please tell me!

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 13/05/2012 15:34
 

wow, that is most certainly expensive :0/.....i have been referred via my GP, i was initially referred to a consultant for sleep apnea as the sleep studies are expensive and i was told by the GP that they are reluctant to do them. I scored 19 on the epworth scale and my dad suffers with sleep apnea, i am guessing that why maybe i got referred. i saw the consultant and she has passed me over to neurophysiologist as she seems to think that narcolepsy is a more likely diagnosis given my symptoms. I guess the only thing you can do is forcefully express the impact it has on your life and state that if it were epilepsy they wouldn't be quite so complacent with getting a diagnosis. failing that write a letter of complaint to GMC as narcolepsy is a treatable condition being ignored that is having a negative impact on your life and family!...good luck with you quest :0) x

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 14/05/2012 09:26
 

Several points to make about this and the first relates to cost. Just because it costs £2,000 in the private sector does not mean it costs £2,000 in the NHS t ohave sleep studies. While costs will vary from site to site I would be surprised if the NHS cost was half of the private clinic. I also have to say that I am unaware of any sleep centre (private or NHS) that is looking for people to go through MSLT for research. Believe me, if we knew of one we would tell you and everyone else!

The question I have is why are you not being reffered for sleep studies? I mean have you said to your doctor, look I have kept a sleep diary and on the ESS I score 18, please send me to a proper sleep clinic? If your GP said no, did you ask him why? Times to get on to a MSLT are getting longer and 20 weeks is not uncommon but knowing that you are going often helps, even if it is months away. Really don't understand this.

john

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