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Lots Of Questions From Newly Diagnosed


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#1 AvengerGT

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Posted 12 August 2012 - 12:59 PM

I was diagnosed with Narcolepsy on 8/8/12. I was having what seemed like seizures while driving. I work for a large corporation and they already know my diagnosis. My job is field service. I can get a call at any time of the day from 7am to 6pm. I also have other things that I am required to do throughout the day. I am often awake a 6am and still working at 9pm. I work in hospitals on radiation produing cancer treatment machines. My job involves driving, high voltage, climbing ladders, working alone, toxic gases and of course radiation!

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.

SO...

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,
~ Todd

#2 Heidi L

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Posted 14 August 2012 - 10:33 AM

Hey Todd.
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.

Heidi

#3 Hank

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Posted 15 August 2012 - 09:05 AM

Todd- I was diagnosed N/C on 5/4 and have lived with this for years. I was also on short term disability in the spring. My wife and I have 3 children and have one income. My car is provided to me by my company. I was in a panic in 11/2011 when I was tested for N but the tests were inconclusive- but I knew it was N. I repeated the PSG/MSLT in April and had 2 sleep onset REM in 3 min and I am now on Xyrem for the past 3 weeks. I also struggle with night time sleep and that is improving with the right medications. I am new to all this and just replied to a different post by Heidi. I have benefited from diet and exercise, and medications have made an enormous benefit. I am using all options for treatment. My doctor clearned me for driving a company insured car and I have a clean driving record. I have not had any of the problems I anticipated. I am almost back to myself and am also sorting out the bills and planning how to make it all work. Be a bit careful with HR- they are looking out for the company first. I worked with a licensed counsellor, my sleep specialist and consulted with an attorney to help me make some of the decisions about reasonable accommodation requests. Adderall XR has been helpful to me during the day and sleep medication at night. I did get nutritional counselling since foods and when I eat them impact how I feel. No caffeine, no alcohol, lean protein during the day, no carbs during the day, smaller/more frequent meals rather than a big lunch. Several small lifestyle changes around diet and exercise have been helpful for me. Time and good decisions have reduced my concerns. You will need some good people to advise you with your decisions and you will make the decisions.

#4 Hank

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Posted 15 August 2012 - 08:06 PM

Here, you might identify with this post from Andy.
http://zombieinstitu...550593432775235

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.

#5 Sisu

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Posted 17 August 2012 - 02:34 PM

Heidi her own opinions and a website where she displays them, and to both of which, she is entitled. However, that doesn't mean the drugs are of no benefit, nor does it mean that we can or should self-treat on nothing but blood sugar numbers. Mine have stayed pretty normal even with the xyrem.

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!)

#6 b.chrissie@yahoo.com

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Posted 22 September 2013 - 09:01 AM

Hey Todd.
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.

Heidi

Heidi...remission? please do tell. I am currently trying to fight this naturally but it is not going so well.