5 replies to this topic

[WillRickard]

So I finally got to see a General Practitioner today and to be honest it was a fairly disappointing visit, but I hope that It wont put people off of seeing their doctor about narcolepsy. (Note this was the same doctor that tried putting me on the same antibiotic for my acne that i'd already became resistant to 2 months before, durr).

 

So I sat down, explained how I felt tired multiple times in the day; naps help a little, but not a great deal. I explained the kicking jittering in my sleep, explained the REM sleep disorder-- falling into REM sleep within minutes, having wild dreams, feeling my eyes going forward and back, etc. I don't have cataplexy (loss of muscle tone, which can cause you to fall), but not all narcoleptics have cataplexy. So I told her all of that and showed her my diary that i'd been making, still she couldn't make a diagnosis.

 

So I told her about my dad having the same problem-- having to take naps and drink loads of coffe. She looked at me and said "it might just be you"-- what kind of doctor says that?? Oh yeh it might just be you!! Yeh sorry your heart failure sir, I think it's just you, bollocks. So she said I sounded a smart person and asked what do I think it is, I told her narcolepsy, she disagreed entirely-- said I have no abnormal symptoms, it would be very rare because it's 1 in a million chance that you have it and also I would be a lot more tired than I am now-- how does that work?? I couldn't barely keep my eyes open all day, felt like falling asleep all day and an hour before going in I had to take 200mg of caffeine just to keep awake. 

 

 

. I was pretty pissed off at that point. She said let's look into it deeper and order you a blood test, I said ok that's a start I guess. Then printed the blood test letter out, handt it to me. I sat there and said well what shall I do in the meantime?  She said "just sleep as much as you can and try napping when you needed it", my reply being "How do I sleep when i'm at school??" and well she just said "I know that's hard but you will have to deal with it for a while". I asked about seeing a sleep specialist and she said that's highly unlikely that we go down that route but we may have to, so we will get your blood test back in the next few days to rule anything else out and go from there.

 

So I was pretty pissed about how uninformed and how unsympathetic she was towards narcolepsy in general.  What do you guys think? 

[Hank]

Its a start. The blood test will rule out any other possibilities. I had blood work done which uncovered a vitamin D defficiency, which happens to be common in people with autoimmune related illnesses, like Narcolepsy. Doctors don't start looking for rare aswers before they have looked at simple answers. 

 

Consider googling the Epworth Sleepiness Scale (ESS) which will give a qualitative number to your sleepiness. My sleepiness and normal sleepiness are two different things and the ESS put a number to it. That might be helpful for your follow up visit for the blood work.

 

I have found it a frustrating balancing act between complaining too little and too much. Too little and you are not taken seriously- too much and you are not taken seriously. Being objective about my subjective experience is the best I can do. Your sleep log was a great idea.

 

Be prepared to get resistance to your complaints, but keep steady with it. Most doctors have not seen a case of N, let alone diagnosed one. I have heard "I am learning from you" as a polite version of "I have never heard of this and I don't want to look stupid".

 

So, try to get a referral  to a sleep specialist for a Polysomnogram and MSLT- that is the best way for a diagnosis.

[WillRickard]

Thanks Hank, yeh I really don't think that they take it seriously in all respect. Well I will ring up the hospital for a blood test appointment tomorrow, then that will probably come back ok, maybe there will be something abnormal, but I doubt it. I hope that I get to see a sleep specialist. Have you had your diagnosis yet ? What do you take? 

[DeathRabbit]

Yeah, some people say it's a 1 in 1 million condition, but statistical analysis has shown it is more like 1 in 2000 people, if you account for all the likely misdiagnoses, unreported, and self-treated cases. Sounds like your GP is just out of her depth. Unless they are very knowledgable about sleep medicine, most doctor's know jack crap about it. Even many so called sleep-specialists know nothing of N. They are jsut pushers for respironics and other CPAP manufacturers. It's pretty hard to find a sleep doc that gives a rip and actually knows their crap. It's just an understudied and underrespected field of medicine.

[sweetest_shone]

Don't get me wrong.. I went years w/ Dr's (in family medicine mostly) putting me on depression meds because my tiredness was coming from depression or changing my birth control b/c it must be the hormones. Or your a new mother things will even out, you'll get a routine and you'll get used to it. And my MOST favorite- you need to eat better and exercise...more fruits and veggies a 180 w/ your life is needed. I left in tears on that day!
I got a regular primary care physican and she actually listened to me. I didn't think I had N.. I thought I had some kind of vitamin deficiency. But she actually suggested I had N. I actually giggled at her suggestion at first b/c I was guilty of being like everyone else and only knowing what I saw on TV.
But my MSLT proved her right.
I was lucky to have a regular Dr who knows about this to even suggest it... I take for granted how rare it is.
Good luck to you.
Keep pushing or find someone who will listen to you. You know your body better than anyone else. You deserve to live your life while you're awake like everyone else!

[munky]

Unfortunately, there are a lot of doctors out there who just don't take kids seriously, regardless of how mature you are or how well you present your information. I'm very sorry you're having to deal with that.

 

However, blood work is the best place to start. There are a lot of conditions that can cause the same symptoms as Narcolepsy, which is why so many who do have it go undiagnosed or misdiagnosed for so very long! If nothing shows up on the blood tests, however, keep pushing. Enlist the help of your father if you need to. You might even consider getting notes from some of your teachers.

 

I went to the doctor because I was getting in trouble for falling asleep at work, though I didn't think I was sleeping. I actually argued several times with one of the supervisors who kept telling me I was sleeping, until one of my co-workers took me aside and told me very quietly that, yes, I was sleeping. So, I made an appointment with the doctor, and sent an email to that supervisor at work, asking for specifics: Was it happening at the same approximate time every night? How long would I sleep? Did I slump over, or stay sitting up? Did I snore? I also asked him to gather the same info (anonymously) from some of the co-workers he said had also noticed it. And when I got his answer, I printed it out and took it with me. If you're falling asleep at school, I would suggest speaking to your teachers. Tell them you are seeing a doctor to try to find out what's wrong, and ask if they're willing to help by writing a note telling what they've observed. It may help get your doctor to take it all more seriously.