Wednesday, June 08, 2005

Going in circles...

I've a Dr's appointment tomorrow with yet another guy I've never seen before *sigh*
Dr's make me nervous. I always feel like a hypochondriac - always have done, even before this all kicked in.
I know I never really get off my chest everything I wanted to say before I walked through their door, I just turn into a little girl who doesn't want to cause a fuss.

I need to stop doing this.
I need to tell him about my ulcerated throat and sinus problems, but I also need to make it clear that I'd like a second opinion about the CFS diagnosis because of the questions raised by Dr Whatever-his-name-was during my home assessment.
I can't have 2 different illnesses - I just refuse to accept that both of these 'things' could have started at the same time, it has to be one or the other.

I've had 2 replies to my queries regarding the possibility of having both - neither of which were from the London sleep centre, it seems the American research centres are happier to correspond by email than my own countrymen.
Ah well...
The first was a very swift reply from a lass at narcolepsy network inc:
Hi Vicky:

I know of no reason why CFS and narcolepsy would be mutually exclusive,
although I can't say that they are commonly found together, either.
Narcolepsy has been misdiagnosed in some people as depression,
schizophrenia, ADD, ADHD and a myriad of other conditions. If you've been
clinically diagnosed with CFS but this diagnosed hasn't been confirmed with
lab or other definitive tests, it's possible that CFS is a misdiagnosis.
It's also possible that you have narcolepsy in addition to CFS.

Can you describe your cataplexy? When does it occur? What causes you to have
it? What part or parts of your body are affected? What happens exactly? How
long does it last? Can you describe a couple of your cataplexy experiences
for me? Cataplexy can be confusing to someone who doesn't have it.
Hopefully, the information you provide will give me a better sense of
whether it is cataplexy or not. (Clear-cut cataplexy allows for an automatic
diagnosis of narcolepsy, but one must be sure ...)

It would be best for you to have a sleep study for narcolepsy. They will
have to consider any impact CFS could have on the results, but this should
not be a problem for a good sleep doc. I suggest you choose a sleep center
where the director is a sleep/doc neurologist, if possible, because
narcolepsy is a neurological disorder. Most sleep docs have backgrounds in
pulmonology, and many fall short on their knowledge of narcolepsy diagnosis
and treatment. You can find a list of accredited sleep centers at You can then check the doctor's background at,
under the link for Diplomates.

Have you considered the possibility that you have another sleep disorder,
such as sleep apnea or Periodic Limb Movement Disorder? These can make you
very sleep during the day because they reduce or prevent the patient from
getting deep, restorative sleep.

If you are diagnosed with narcolepsy, we encourage to join Narcolepsy
Network. We are the only national patient support group for persons with
narcolepsy, and we rely heavily on our membership to sustain operations.
You'll find a description of our member benefits on the Membership page of
our website at In particular, our newsletter
serves to empower patients to get the best possible care and maintain the
highest quality of life possible.

This was my response, I'm hoping that she gets back to me equally swiftly:

Hi Sharon,
First of all THANKYOU for responding so quickly!
To be honest until I read the description of cataplexy I would not have thought there was a name for it - I just call them 'sleepy fits'.
They tend to come on with a few seconds warning - everything starts feeling a little 'distant' or my hands start tingling a little, it gives me just enough time to either tell someone if I'm out (I rarely go anywhere unaccompanied these days because of them) or to get myself seated comfortably.

They come on in stages:
1. Limbs become too heavy to move, sluured speech/ can only
communicate in grunts
2. unable to move or communicate but still aware of surroundings and
whats going on
3.unable to move or communicate, only vaguely aware of whats going on around me
4. unable to move or communicate, aware of myself and any physical
discomfort - ie if my head has fallen too far forward and I have no
support. Not really aware of anything else.
5. 'asleep'

Usually I can kind of 'come round' within about 20 minutes before it gets to stages 3-4 if it lasts longer than that then I'm going to be out for the count.

When I wake up I tend to be a bit fuzzy headed - this is worse the longer I'm out.
Sometimes I can be like a walking zombie - I have been known to stand looking at a sink full of pots for a good 10 minutes trying to figure out what it is I was going to do.
Needless to say it gets very frustrating.

I have not really figured out what triggers it, it does seem to be quite random though my boyfriend has found that if he catches me before I get too deeply in then a foot massage will bring me around within 5-10 minutes (though that could just be a coincidence)
I haven't noticed that laughter sets it off, quite the opposite - if I can be made to laugh it helps me 'fight it off' but it does happen more frequently when I'm stressed about something.
When I say my limbs become too heavy to move I mean that quite literally, first of all my hands and my arms go - since I usually have chance to sit down I'm not too certain at what point my legs stop working because I'm generally too busy fighting to keep my eyes open and communicate to whomever I'm with not to worry about it.
I can fight it at least half of the time - but when I do it's only for about 20 minutes at the most and then I have a really bad one so I tend to just 'go with it' in the hope that i only lose a maximum of 20-30 minutes from my day instead of the rest of it.
I can have more than 1 attack a day but rarely more than 3.

The other worrying thing is the 'hallucinations' mentioned on the site - I've always had very vivid detailed memorable dreams - ever since I was a kid.
I've numerous times been adamant that I've said or done something that in reality I haven't, I also have the most horrific nightmares - so vivid I can describe them in extreme detail.
To me thats normal, but almost everyone I know says they rarely remember their dreams, let alone in such detail, nor do they mistake dreams for waking life as I have been known to do from time to time.
The second response I got was from the centre for narcolepsy research at the university of Illinois in Chicago

Vicky --
Thanks for your inquiry. However, we cannot readily put your mind at rest about this issue, for several reasons:

1. Different sets of people with narcolepsy have different sets of symptoms.

2. Some people with narcolepsy have other sleep disorders or other medical disorders. It can be difficult to tease these various disorders apart.

3. A person with narcolepsy may experience changing sets of symptoms over time.

4. We still don't have a full and well-confirmed understanding of the nature and causes of narcolepsy. Therefore, specialists will sometimes disagree about a diagnosis of narcolepsy.

However, clear and recurring incidences of cataplexy would generally be considered as confirmation that a person has narcolepsy.
I suggest that you visit the following website for further information:

He also gave me the name and address of a lady at this institute and suggested I contact her for further information. I may well do so if I have no joy at the dr's tomorrow.

I just wish that there was someone equally helpful in this country I could speak to.

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