I am not sure if it is time yet.

[lukeduke]

Well let me introduce myself. I am 36 years old. I was diagnosed at 26 with MS and then at 35 with obstructive sleep apnea. Now at 36 I have also been diagnosed with narcolepsy. I am not sure if I want to get on disability but I recently lost my job due to the narcolepsy.

My Primary Dr did not say anything about the narcolepsy until after I told him that I lost my job and told him why. My neuro would be on board with my going on disability. I have also discussed my case with a lawyer about the disability. The first thing he said was that I was too young.

I was working on the farm at ten years old and have been working at least every summer since then. I was put out of work a few months before I was let go from my job. I was going to try to determine my sleep issues and how to handle them. I did another sleep study and they determined that my CPAP machine was not turned on high enough.

I thought that that corrected my issues and was allowed instead of two fifteen minute breaks three ten minute breaks every day. I also was allowed to take a lunch break which I very seldom took. My neuro would have been on board when they put me out to go on disability. I did have LTD insurance at my job but lost that when I lost my job. I am looking for work, but I mean I cannot stand up for eight hours a day and based on my last job I can no longer sit for eight hours a day so what do I do?


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[pennstater]

Sorry to hear.

What have your doctors said about trying to treat your narcolepsy? I take a medicine for MS Fatigue which is actually an off label use of a drug that was FDA approved for narcolepsy: Provigil is the Rx.

Is the lawyer your discussed with strictly an SSDI attorney? Or is he a general attorney? You really need to discuss with one who is an expert.

While true the younger you are, the tougher it may be to obtain SSDI as they view you as more adaptable and easier to train. However, if you are disabled and your medical records support it, you can be approved.

[Mamabug]

Social Security Administration will look at whether you are physically and mentally able to do any of your past relevant work or whether you would be able to adjust to other work. This will include your ability to maintain concentration at work, which could be affected by your narcolepsy.

It does appear that, if you are over age 45, they do consider you less able to adjust to new work than if you are younger. Every additional five years seems to affect that in a bigger way, according to their standards. You can read some of that information here:
https://www.ssa.gov/disability/step4and5.htm#&a0=1&a1=2

However, people under age 45 are certainly approved if they meet criteria.

I was approved for SSDI at the age of 46, after losing three jobs in the six years after I developed MS. I was approved quickly and easily -- within 3 months. It is possible that I should have applied earlier, and might have been approved. But, I really wanted to work and, for parts of those years, I functioned fairly well. But, my flares were frequent and severe and, while I was in a flare, my abilities to work were affected in a big way.

[HuntOP]

your position is very tough,you still want to remain in the work force, butit is increasingly difficult for you to do so. Depending on how you could train, and what you could train for and whether or not you would be happy doing this for years to come are all part of the equation that needs some serious thought. I was approved for SSDI when I was 43 years old, I was also very quickly approved (a matter of months). I am just stating this so that you no that it is very possible to do this before a certain time frame set up by the Social Security administration. No matter what you decide to do, I wish you good luck.

[Mamabug]

Yes; 3 months for me. No attorney, no denials. Just worked real hard at my application.

[DebbieB]

Very helpful, thanks

Hi, this is a great topic (I know, a common one), but very timely for me right now as well. I'm still working, have asked for a number of reasonable accommodations, such as telework (which I do 3 days a week), and now will probably be going in for a more flexible work week, as there are days that I just can't work at all, or need to take 1/2 day, etc. I've exhausted almost all of my leave taking time off as needed when I don't feel well or for doctor appts. (and I'm a federal employee and had generous leave). This past year I've thought about disability more than ever, and in the past few months, have been thinking about it probably daily. Really struggling to know "when" it's time.

I always appreciate hearing others' experience with this, thank you all.

Also, MamaBug, thanks for that link about age (and other variables), hadn't seen that before (I'm 54, btw).

[Mamabug]

You're welcome, Debbie.

[lukeduke]

We were trying to get me on Provigil for daytime sleepiness before I lost my job. My Dr was not using the right codes for the insurance to pay for it. After I lost my job is when he diagnosed me with narcolepsy. I am on the Provigil now. I just paid for it. The first time I called my pharmacy to find out the price they said it was about $850/month for the generic. They then called some other independent pharmacies and told me $350/month. I finally just said to heck with it and told them to order it for me. It was only $122.00 for a months supply. I am hoping that with me new insurance plan I had to get when I lost my job that the Dr will use the correct diagnosis codes for the insurance to pay for it. And I am still not sure if I want to go back to work. It was not fun where I was because the lady that was my Director and got promoted to a VP always made me feel as though she did not believe that I was competent to do my job or even capable of doing the job.

[jreagan70]

And I am still not sure if I want to go back to work. It was not fun where I was because the lady that was my Director and got promoted to a VP always made me feel as though she did not believe that I was competent to do my job or even capable of doing the job.

Probably half the people in the country don't want to go to work for similar reasons. It doesn't have anything to do with having MS or narcolepsy or anything else. And not wanting to go to work because you're afraid your boss will be an idiot won't qualify you for disablility.

It's a shame your primary care doc let you down. It doesn't sound like he has much experience with trying to keep people with health conditions employed. If he'd been on the ball, he would have ordered necessary medical tests and diagnosed you while you were still employed so you would have had a chance to qualify for time off under FMLA and reasonable accommodations under the ADA.

Hopefully you can pick a more knowledgeable doctor who can support your needs in a way that might get you qualified for FMLA and ADA accommodations on your next job. At a minimum you'll need medical testing to use in an application for disability. Losing one job because of untreated narcolepsy won't qualify you for SSDI or SSI. You'll need a lot of supporting evidence because narcolepsy isn't one of the immediately qualifying conditions for disability. You'll benefit from a specialist who knows what tests to run and how to document your medical record in a way that supports a disability claim. And a skilled disability attorney won't hurt, either.

I hope you can get your narcolepsy under better control and get off to a better start with a new doctor so you can keep working.

[lukeduke]

I have a disability lawyer. When I get a denial letter on my appeal from the Social Security Administration I am going to scan it and email it to him and get him working on it. I keep applying for jobs and not hearing anything from anyone except that they either filled the position, I'm not what they are looking for, or they eliminated the position before filling it. I know that narcolepsy will not automatically get the disability. I mean I do want to work. I just do not want to work somewhere like I was for 9 of the last almost 11 years that sucking up to the boss gets you ahead. One guy actually left because someone who started after me and had the same qualifications as I did was promoted to management. He was the lead over both of us when we started.

[Mamabug]

All of your symptoms are important. They all have the potential to contribute to your inability to work, if you are disabled. Your narcolepsy, your MS, etc. Think through all of your symptoms and when they began occurring. Especially think through whether you can provide documentation of those symptoms -- ie: did you report them to a doctor, so they should be in their documentation, even if you weren't diagnosed yet.

For a list of symptoms that can impact MS, check this out: http://www.msworld.org/forum/forumdi...29-MS-Symptoms
Perhaps you are having symptoms that you haven't considered listing in your SSDI application and they might be affecting your ability to do your job. As I said, think this through.

Make lists of those. I don't know how working with a disability attorney works, since I did it on my own, but, I would hope that, if you provide that information and documentation to the attorney, the attorney should include that in your appeal.

And, don't forget about stress (and / or anxiety or depression). If MS has affected your ability to deal with what used to be "normal" life stressors for you, that's important too. And your ability to make good decisions at work. And, if job stress triggers MS flares that affect absences from work, that's important too. If any or all of these apply to you, they should be on your application or in your appeal, in my opinion.