narcolepsy & other symptoms

[confusedandsleepy]

Hi - I am a 41 yr old -diagnosed with narcolapsy and cataplexy 10 months ago. On my journey to this diagnosis I was referred to a neurologist for two seperate issues - chronic muscular (leg) pain, and involuntary twitching - from face to feet.
Recently have developed further symptoms - the most worrying being eptopic heart beats and an atrial flutter always associated with waking up (have been referred to a cardiologist). But also the pain now includes both upper arms and hands and a stiff / clicky neck. My cataplexy has got significantly worse over the last few months and my fatigue has worsened.  I struggle to find 'words' often everyday ones.
I take provigil daily which helps me function normally (to others anyway). I also get a dry mouth during sleep - when it seems in order to produce saliva i have to do it voluntarily as it does not happen normally.

My question is this - can these symptoms all be related? I am worried that many of these symptoms fit CJD - though I first noticed the cataplexy 5 years ago.

[noops01]

Hi,

Did you undergo EEG and MRI of brain at any time? Have you been able to see the cardiologist yet?
Some of the symptoms that you are experiencing like dry mouth, tachycardia could be a side effect of provigil. I would suggest you to consult a neurologist as soon as you can.

[DrBhumikaMD]

Hi,
You need to schedule an appointment with your cardiologist and neurologist at the earliest. Also ask them about what they think you might be suffering from and what are the treatment options that you have. You will need to get an ECHO, EEG AND probably an MRI brain too. Only after a confirmed diagnosis is established can appropriate medication be started. Goodluck.

[mastkids]

I had the twitchy muscle and stiff neck. I have cataplexy that lasts up to 3 hours with many visits to the emergency room; just FINALLY diagnosed 2 weeks ago.

I also have hypersensitivities to food, drugs, particulates in the air so i see an allergist/immunologist for that. Because of other symptoms and because he thought the "episodes" (which we now know as cataplexy) were parasympathetic nervous system surges, he prescribed Urecholine (Bethanecol) to give me a steady parasympathetic output. I had taken Urecholine some years ago, prescribed by another doc but it had been taken off the market for awhile.

One of the changes I have found is that it treats the twitchiness (which I'd always described as "ratchety" movements). I take it 4-5 times a day and can tell when I need it because of the sensation in my movements. I start to feel the twitchiness, take a pill and my movements become smooth again.
Urecholine has improved the stiff neck, various transient joint pains as well as a chronic hip pain I've had since 1980s.
I have not read that Urecholine is prescribed for people with narcolepsy/cataplexy but it has made a difference for me.

I have taken Dexedrine for for 10 years ADD (now I suspect it's narcolepsy/cataplexy). That mimics sympathetic nervous system output. The doc who originally had me take Urecholine is the same doc who originally prescribed Dexedrine.

I think the Dexedrine and the Urecholine are helping keep the autonomic nervous system in balance.

It might be something your doctor can consider.