Carolyn's Status Updates

Hi . Your primary care doctor should be taking charge and sending you to the right specialists to handle all these issues. If that isn't happening, it might be time to find someone new. It would probably be easiest to see a neurologist for both the stroke and the narcolepsy. However, it might not be easy to find someone who is familiar with both.
Though I would love to see you get treatment for your narcolepsy, it worries that you haven't had any follow-up care for the stroke or any advice about preventative care. Please see a primary care doctor and get a referral to a neurologist ASAP. Get the stroke care taken care of first. Hopefully, the neurologist will also be able to treat your narcolepsy and, if not, the doctor will refer you to someone who can. Here is an article about narcolepsy treatments that might interest you: https://narcolepsy.sleep-disorders.net/treatments. Keep us posted if you don't mnd. I'll be thinking of you. - Lori (Team Member)

I was finally diagnosed when I was 52, but the doctor thinks I've had this since I was a very young child. I am on no treatment plan. The doctor that diagnosed me was a pulmonologist. She knows how to do sleep testing and diagnosing, but nothing about the neurology of Narcolepsy. For several years I was put on one medication after another. None of them worked. I also have a long list of other medical issues that all seem to mimic each other so I never know what's going on or where it's coming from. All the meds have the same side effects. I was told about a year ago that I had had an Ischemic Stroke. I had no idea of memory of the stroke. None of any of my doctors have suggested doing any after strike care. I feel like my problems from the stroke are getting worse and that I am losing myself. I have no idea what to do. I get so tired of having to be my own doctor.

Hi . Welcome to the community. Are you newly diagnosed? Are you on a good treatment plan? I hope you have more energy today than you had yesterday and that the "wired" feeling is gone. Sleepy and wired definitely are not compatible. Sending the best of all wishes your way. - Lori (Team Member)