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How Do The Nhs Diagnose Narcolepsy?

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#1 Benjaplexy

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Posted 24 August 2013 - 04:40 AM

Hi all,

 

I have, reluctantly, allowed my doctor to refer me on to neurology as he seems pretty convinced that I'm suffering form narcolepsy and cataplexy. I seem to be pretty much a textbook case from what I've read, but I'm really not up for doing a sleep study or a lumbar puncture, and this MSLT just sounds horrendous and unscientific.

 

So I was wondering if any of you from the UK know how the NHS tend to test for narcolepsy and cataplexy? Is it worth the bother? I don't want to be banned from driving, I've not even started learning yet! And I definitely don't want to have this diagnosis hanging over me for the rest of my life. But then I am desperate to just get some drugs to keep me alert or awake, and for my damned muscle weakness to stop holding me back!!

 

Anyway, even if you don't have answers for me, it'd be nice to hear your thoughts.

 

Thanks all,

 

B



#2 doinmdirndest

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Posted 25 August 2013 - 07:43 AM

what is the nsh?   and also, what could be more scientific than a test to discover the average time it takes a person to fall asleep?  this= 15 min. for normal folk, if yours tests < 7 it = a n. or an I. h. diagnosis w/mslt. 

 

your dr. can prescribe stimulants once this is established, if they are well tolerated you are a safe driver, provided you yet respond to your rx.  time will bring loss of this w/these meds.  perhaps your md will raise the dose to get you wakeful again.   

 

they must remain well tolerated thereafter, mentally and physically.

 

to endure successfully a lifetime of stimulant induced wakefulness via ever-increasing doseages you must be, and must remain at all times, strong/healthy in both areas.  negotiating w/an md to provide same successfully may prove extraordinarily difficult.  I do not know, but I very strongly suspect this becomes less of a problem if you are on private pay.

 

when at first experiencing the effects of these meds I would strongly advise not acting on any seemingly good idea you have about anything until you yet find same idea good after these effects vanish.    your blood pressure must be kept normal should you and your md go forward w/such a regimen, lisinopril does it in my case.

 

the mslt, if +, is your md's 'permission slip' for granting you access to these meds.  nothing else is needed for medical justification, ever, thereafter.

 

I strongly recommend you get an mslt.  I don't know what to tell you if you get a false - though.  It didn't happen to me.

 

best wishes/good luck.

 

p.s. -  I just went back and read your post again.  I now see that unless a scot sometimes does not need to drive until later in life,  you are just a kid.

 

these days the only stimulant they prescribe is a new drug called nuvigil.  it works fine for some.  for others it does not.  sometimes you must allow months for it to work right.  if it does not work for you likely insistence on your part shall become necessary before your md will go forward w/one of the older drugs.

 

if he or she does beware of it, even as it may prove of benefit to you, which it might or might not, once it is begun.  never forget: speed kills.

 

also, the scientists say a cure is forthcoming in a few years.  and there are other alternatives today.  I can sure relate to your sit., my untreated n. caused me to drop out of school in the 8th grade. 

 

be sure to stay in school. 



#3 Benjaplexy

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Posted 25 August 2013 - 03:08 PM

Heya, thanks for you post!

 

The NHS is the National Health Service, it's the free healthcare system that we all get access to in the UK. I ask because the healthcare system in the US is really very different, and most information I can find is about how you do things there.

 

I've got a year left of school, I'm trudging through it. The drugs sound interesting, and yeah, you're right about the MSLT that I should probably get it done. I guess part of me is scared that I'll be a false negative, and part of me just doesn't want to get diagnosed with this, haha.



#4 Ferret

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Posted 25 August 2013 - 04:51 PM

You are unlikely to get a prescription that could help you unless you get the proper tests done that prove it. Catch 22.