2 replies to this topic

[eldestpenguin]

Hi All! Brand new here, just registered yesterday. I am having a great deal of trouble logging in, so it may be a while before I manage to post again! Anyway, I have a 14 year health history of all manner of neurological abnormalities. It was disabling at some points. I have been on Provigil and Neurontin for more than 5 years now. At present, I am seeing a neurologist that is a sleep expert. He has ordered a MSLT, which I will have April 12. I will get the results April 29th. I have a million questions. I don't doubt that I have Narcolepsy, but it does not seem to explain many of my other symptoms thus far. I know there are some secondary conditions that are not as commonly known. Do any of you have neurological oddities outside the classic Narcolepsy symptoms? Are there any other diseases/conditions that have a tendency to tag along with Narcolepsy? Any feedback would be helpful. I can't seem to check my private messages on this board yet. If you would like to e-mail me my address is (((EMAIL ADDRESS WITHELD))).

[greatbig47]

I am seeing a neurologist that is a sleep expert. He has ordered a MSLT, which I will have April 12. I will get the results April 29th. I have a million questions. I don't doubt that I have Narcolepsy, but it does not seem to explain many of my other symptoms thus far. I know there are some secondary conditions that are not as commonly known. Do any of you have neurological oddities outside the classic Narcolepsy symptoms? Are there any other diseases/conditions that have a tendency to tag along with Narcolepsy?

eldestpenguin! WELCOME to our sleepy little community! You came to the right place. You'll have a million questions, and that's good.

I believe that everybody has oddities. The diagnosis for narcolepsy can be rather specific or very loose...depending on the doctor you have. Some doctors look at the amount of a chemical (hypocretin or orexin) in your brain. Other doctors look just the symptoms and the results of your sleep test.

Narcolepsy is commonly mis-diagnosed (as many on this board can tell you). I was mis-diagnosed as bi-polar, and the meds that addressed this misdiagnosis took my entire life for a spin.

There seems to be a handful of conditions that "hang out" with narcolepsy, but naming them isn't going to help. Everybody with narcolepsy seems to have differing conditions of their conditions.

When I was first diagnosed, my first thought was, "I don't fall asleep mid-sentence for no reason at all." For me, the secondary conditions weren't as secondary (cataplexy and sleep paralysis).

It is important (!!!!!) that you know you will be the same person on April 29th that you are now. A diagnosis of narcolepsy doesn't all of a sudden change you, it just gives you a possible set of tools to manage your condition. Know that you will be the same awesome person then that you are now!

The MSLT will be very helpful for your Docs in getting some answers.

We're here for you! Keep us informed, okay?

-Stu

[Lovemyhusband]

Welcome aboard eldestpenguin. Its nice to have you join us.

Stu was right (as usual), you will still be the same person. A dx is only the begining to understanding what you can do to make your life better. Good luck and keep us posted. Consider us your extended family, you know the ones you actually like.**grin**