mis-diagnoses???

[jayde-101]

for they last 9 or so months i have been being tested and treated for epilepsy... and i have just been referred to a sleep centre and they are suggesting that it may be narcolepsy with cataplexy ... im not sooo confused not sure what to think anymore i just dont know ... anyone else had similar happen ??

its been happening since around 16 year old and im 22 now .. just want a firm diagnoses :'( i feel like im back to sqare one

 

[Wobblez]

Hi Jayde,

I know what you mean about wishing, hoping and praying for a firm diagnosis! I have a solid 15years of childhood epilepsy history, tonic clonics etc, yet it's still taken me 2 years to get a diagnosis of my adult epilepsy. I think the key is finding a good Neurologist you trust, and being patient as long as you feel he/she is trying to follow up potential "leads". Sounds very CSI doesn't it.

What is cataplexy?

Do you keep track of your seizures/symptoms? Endless has just recently put me on to www.seizuretracker.com and it's fantastic! Have a look =)

Good luck, I hope you get some answers soon.

 

[jayde-101]

cataplexy is a loss of muscle tone which its brought on by emotions such as sadness and laughing and its always teamed with narcolepsy

 

[Nakamova]

When will you be having the sleep study done?

 

[jayde-101]

just waiting for the appointment to fall on the doormat now so not sure yet