Hi All,

Like Andrea, I also had a nightmare of a journey. I was diagnosed last Tuesday; narcolepsy with cataplexy. It is thought that I have had narcolepsy since around the age of 7 but only developed cataplexy about a year ago (I am now 24). Whilst growing up my tiredness, hallucinations, automatic behaviour and sleep paralysis where put down to trauma. I have had to move around Doctors surgeries several times as I was never taken seriously, and as I am a student it was always put down to this. I was even called 'lazy' by one Dr!! I was also told I had depression and prescribed citalopram, and although I did not feel I was depressed, I felt I had to try it just to prove that it wasn't, so that I could find out the real reason for my 'falls'.

Luckily I found a really good Dr who said I showed all the symptoms for narcolepsy and referred me to the hospital (first week of august). I had to wait until the 17th of October before my hospital appointment. This consultation was pointless as they confirmed they believed I had narcolepsy, but they were unable to diagnose it. However before they were able to refer me to the neurology department they had to rule out sleep apnea, so I was wired up and sent home. The following week it was confirmed that I did not have sleep apnea, and so I was referred to neurology.

There must be a real shortage of neurologists because I was given an estimate of 4 months wait before I would be seen by a neurologist. My falls then declined further so I went private for the first consultation, and I was seen the week before Christmas (2 weeks after i enquired). My neurologist confirmed that my symptoms sounded like narcolepsy and referred me for the usual tests (which I had back under the NHS, as I could not afford them privately). I then saw the neurologist privately again for my results consultation (last week) where my diagnosis was confirmed. I have been put on 200mg of provigil as a starting point and was told I need to be seen again after one month, which again will have to private as there are no appointments under the NHS for 3 months. My neurologist has been great, and recognised how I had been let down by the system and so tried to get tests done asap. Still, a slight relief now that im not 'lazy' and there is a reason for it and hopefully these meds will start to work soon, on day 4 - still no difference really, just nausea and loss of appetite.

I stopped driving last year as I fell asleep whilst sitting in traffic, so I took this as a warning sign and sold my car until I knew what was going on. Now I have a diagnosis I am going to inform the DVLA and hopefully ill be able to drive again in the near future.

The diagnosis process is definitely stressful - I hope you get some answers soon!

Hi Andrea,

Im sorry to hear you still have no diagnosis! The 'not knowing' is very stressful.

Yes it seems odd that he Prescribed you that, without telling you a diagnosis and not wanting to review it!! My neurologist told me to keep him updated via email until my next consultation!!

Is your medication helping in anyway?? I'm still waiting to see a difference from mine.

I suppose at least a couple of things have been ruled out- just stay persistent until you get some answers!

Gemma

Hi John and other forum members

Just heard today that I have my driving licence back and am now legal to drive as of ten past one this afternoon, once i had got the insurance sorted out again. Soooooooo relieved to have my freedom back again. Thanks for your forum and support, even although I didnt have Narcolepsy but another recognised sleep disorder.

Regards Andrea