Lots Of Questions From Newly Diagnosed
Posted 12 August 2012 - 12:59 PM
I am trying to figure out what my future holds. I don't think I will be able to do this job for much longer. I was surprised they even let me come back to work with this diagnosis. I am already considering bankruptcy after being on short term disability(40% of base pay) for over a month. I am the only one in my household with an income. The doctor put me on Nuvigil but it's not working well. Now I can't sleep at night.
How likely am I to qualify for Disability?
How do you look for a job in this economy with Narcolepsy?
If I qualify for Disability, how long would I have to be unemployed before I could apply?
Should I get a second opinion? My Neurologist said I have Narcolepsy, but he also said I only went into rem sleep on one of the five sleep tests. Two rems is the requirement, he said it was close enough. Will it be close enough for Disability?
My company provides me with a vehicle and I am covered on their auto insurance. What will happen with that? How is auto insurance affected?
Has anyone been down this road that can tell me their story so I have an idea of what is in store and possibly keep me from making big mistakes?
I have some weird symptoms, bad memory loss, moments of disorientation. Maybe they are caused by something else?
Sorry for the letter, Thanks,
Posted 14 August 2012 - 10:33 AM
Did your doctor tell you anything about diet and narcolepsy? About lowering your blood glucose levels?
Your symptoms seem to be just be getting to the clinical point, you may be able to control your symptoms using diet.
Narcolepsy Network and it's corporate donors don't like it when I tell people that, but it's true so I do.
You see, I think it would be much better if you kept your job and didn't go on disability. I think the economy sucks enough as it is. And the worled would be much better off if you earned and spent that money instead of your doctor.
So, look me up, I'm guessing you can feel better in a couple weeks.
my link is down below.
Posted 15 August 2012 - 09:05 AM
Posted 15 August 2012 - 08:06 PM
Here, you might identify with this post from Andy.
Yes of course, do a lot of research, try all your options. The drugs are actually kind of fun. For a while.
But don't believe your sleep specialist has any incentive for you to actually get better.
Heidi- Thank you for providing an answer to the questions you raised. I found a great answer in the link you provided: "I'm not clinically diagnosed N with C or celiac, but I know what I had, and I know what fixed it." - Andy
Unlike Andy, I did not know what I had until it showed up on a graph. Claiming to have the "fix" for an undiagnosed illness that was actually "self-diagnosed" seems questionable. I have a family depending upon my diagnosis, treatment and recovery. I will have no further interest in reading or replying to your posts.
Posted 17 August 2012 - 02:34 PM
Many people who can get their narcolepsy under control stay employed, drive, and manage well. You'll need 8 hours uninterrupted to sleep, if you're on Xyrem, but it could really help. It's helped other people on this forum. There are various medications to try by day, and I need considerably less of mine now that I'm on the Xyrem. Appropriate treatments do exist, and might keep you working.
Find a good sleep doc, get tested again if need be. (and please believe that your doc does want you to get better. There's no incentive to keeping you sick; there are more than enough people who need docs that they don't have to keep you sick to get paid!)