Hello Fellow NN Members:
There's a lot of information out there floating around about narcolepsy. It's autoimmune. It's neurological/sleep-related. It's endocrine/hormone-related. It's systemic. Since narcolepsy is rare, there aren't a lot of papers out there about people diagnosed with narcolepsy and other illnesses, and most of those I've found are about common or related misdiagnoses instead of co-diagnosed illnesses.
So, I was wondering if other people here would share their diagnoses. If you were misdiagnosed before you had narcolepsy, what were you diagnosed with? If you have other conditions or other health issues, would you share them?
I wasn't misdiagnosed before I was DX'd with narcolepsy.
My other diagnosis include the following:
Polycystic Ovarian Syndrome (PCOS)
Thoracic Outlet Syndrome
Technically my hypothyroid isn't diagnosed - my doctor isn't sure if it's Hashimoto's or just hypothyroid.
1 reply to this topic
Posted 24 July 2012 - 04:18 PM
Wow, so sorry you have so many medical problems but at the same time I'm glad to see I 'm not alone. I have a laundry list of autoimmune symptoms that are still a mystery and go undiagnosed. In my 20s I was diagnosed with stage IV Endometriosis which is now considered autoimmune and I also was diagnosed with Chronic Active Epstein Barr Virus which many doctors still say is just incidental in people who've had Mono and doesn't mean anything. The endometriosis is no longer an issue because I had a total hysterectomy almost 6 years ago. I get hives very often and angioedema in my lips. I have recurrent Dishydrotic Eczema on my hands and have to use steroid creams and get shots when it's really bad. I'm pretty sure I have a skin disease called Hydradenitis Suppuritiva but haven't consulted a doctor because there really is no cure or preventive treatment. It's a condition where you get horrible cysts/boils that are very painful and leave embarassing scars and it's also believed to be autoimmune. I've also recently been tested for Cushing's disease. It's rare and VERY difficult to diagnose plus most doctors know very little about it so it most likely goes undiagnosed in many patients. Now everything is getting blamed on my lack of sleep and exhaustion but if I am treated properly for the sleep issue and still do not see a great deal of improvement in my other symptoms in 6 months or so, I am going to try another doctor. And of course I was misdiagnosed as being Bipolar for many years. I try to keep my chin up and take it all in stride and honestly it's all gone on for so long now that it is my "normal" so I don't really know any different. Some days are worse than others.