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#1 Stefan_Pierre_Poulin

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Posted 13 September 2010 - 09:55 PM

Hello there, I am a 21 year old who was diagnosed with Narcolepsy and Cataplexy leg movement syndrome in July 2009. I than had to deal with my insurance Anthem Blue Cross Blue Shield deny paying for any of my medicine. They told me to pay for it outright. I than had to wait all the way until April 2010 until I finally got accepted onto Saga or what they now call Medicaid. Since then I have continued to regularly see my Neurologist, and Doctors at Yale New Haven Hospital in Connecticut. We have been working on medicine kinks, as well as sleep studies to make sure everything is working to par. I have made I would say a 80% recovery going from my heaviest 307 in January. (this was when the cataplexy was so difficult I had trouble getting to the rest room, and my mother had to wheelchair me around if it was more than like 20 steps to get to where I was going). Since then I weight 266, and have rehabilitated myself into I would say possibly the best shape of my life. It has been not only mentally draining but physically. I take Xyrem 3.75 2 times a night, Ropinirole HCL 5 mg and, Provigil 300 mg regularly. About a month ago after being denied again for SSI I and my mother ran into problems. Since I lost my job back in July 2009 when I became sick and have had no job since, I had no money coming in so I had no money to give my mother for rent or to help with the bills. She got her hours cut by 2/3rds and she has run into possibly losing the house. I had no choice but to look for work to help pay some bills. A month ago I got a job with Bed Bath and beyond. I work 20 hours a week and mornings because nights are still difficult, I have most of the attacks at night if I have ensured a lot of energy during the morning and afternoon hours.

Basically my questions are I received a reevaluation letter from Medicaid requesting a W 1471 from the University, they have never heard of it, and my Caseworker never returns my calls. What should I do?

Will I lose insurance if I have a part time job? How much can you make before you can be dropped?

When I graduate, and possible get a high paying job but they will not cover me for insurance because of my persisting condition and neither will any other providers, will I be able to get on the spend down Medicaid considering my medicine runs 4500 dollars a month. If so how much will I have to pay out of pocket?

When you are on Medicaid if you get an inheritance, is it true that the state takes it all?

Does anyone with Cataplexy Still feel like nights are very difficult, and it is like the meds only help you barely make it through the day??

When you are having an attack does one of your eyes move uncontrollable and you get dizziness in your eyes, like you have just been punched with a haymaker and are dazed for a second?

Does anyone know what causes you to randomly develop all of these out of nowhere?

Will I ever be 100% or is my life changed forever?

Does anyone regularly try to go to the gym, or should I stay away from regular activity to let my meds do work?



Thanks for your time please get back to me with any info – God bless you all- Stefan

#2 Saraiah

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Posted 01 October 2010 - 04:20 PM

Hi Stefan,

I'm so sorry that it's taken me and everybody else two and a half weeks to see and reply to your post. I'll have more to say later in reply to your questions about symptoms, etc., but in the little bit of time that I have right now, I want to point you to a potentially useful and competent source of both information and perhaps even (always totally free!) assistance in getting some of the help that you and your family need and deserve. I learned about this completely by accident, when a smart friend who was getting denied services discovered this resource in the state in which he and I both live.

Just a caution: There are a LOT of very long and bureaucratic words in my answer. Don't let them scare you away. They're just the names of some extremely helpful government agencies. I do understand that this is going to sound ridiculously implausible, but it was at least my friend's experience that dealing with this one government agency was easy, and that the people he talked to were caring and responsive. So I'm hoping that was not an aberration, and that your experience with your state agency will be similarly reassuring and helpful. So, with that warning under your belt, here we go:

There is a congressionally-funded and mandated "Protection and Advocacy" agency in every state in the U.S. which exists for the purpose of helping people with any sort of disability (including disabilities caused by narcolepsy) to 1) find out what their rights are, and 2) often to help them get those rights. These agencies' employees are lawyers, and all services the Protection and Advocacy agencies provide to disabled individuals are completely free of charge. You can find out when it's time to call your state's Protection and Advocacy by looking at the plain-English explanation on the National Disability Rights Network's (NDRN) website here: http://www.napas.org...s/pwd.htm#comm.

So your questions included:

Basically my questions are I received a reevaluation letter from Medicaid requesting a W 1471 from the University, they have never heard of it, and my Caseworker never returns my calls. What should I do?

That National Disability Rights Network website says, "Call your state P&A if you have a disability and are having problems... [including]: Getting the health care services you need...Getting your medications paid for...Your Social Security or other benefits have been stopped..." It seems to me that potentially losing Medicaid because of problems with a caseworker not returning calls would probably fit into this category.

Will I lose insurance if I have a part time job? How much can you make before you can be dropped?

AND

When I graduate, and possible get a high paying job but they will not cover me for insurance because of my persisting condition and neither will any other providers, will I be able to get on the spend down Medicaid considering my medicine runs 4500 dollars a month. If so how much will I have to pay out of pocket?


That National Disability Rights Network website says, "You can call a P&A about employment when...You want to know what will happen to your benefits if you go to work. Benefits may include- Social Security, Medicaid, TANF, Medicare, Housing, Food Stamps, [and] Transportation"


You can find your state's Protection and Advocacy agency by:
Going to the U.S. Department of Health and Human Services Administration for Children and Families website to find the name and contact information for your state's Protection and Advocacy agency, right here: http://www.acf.hhs.g...tates/pas.html.

Stefan, you mentioned getting treatment in Connecticut. If you also live in Connecticut, your state Protection and Advocacy agency is:

CONNECTICUT PROTECTION AND ADVOCACY AGENCY: Office of Protection and Advocacy for Persons with Disabilities

60-B Weston Street
Hartford, CT 06120-1551

Phone: (860) 297-4300
TDD: (860) 566-2102
Toll Free: (800) 842-7303
Fax: (860) 566-8714
Web Page: http://www.state.ct.us/opapd/

If you decide to call your state's Protection and Advocacy agency (and I really hope that you'll give it a try), would you come back and let us know what happens? It would be really useful to know if my friend's experience is typical or not, since it was indeed so surprising to have a good experience with a government agency.

I'll come back in the next day or two to try to share what I know in response to your other questions, if you haven't already found good answers. I'm in a narcolepsy support group in the Washington DC area, and even though my knowledge is limited, I've met enough very smart PWN now that I can often remember which experienced person to ask for help. And hang in there! It sounds like you're doing an excellent job in coping with a tough situation. Good for you! Will be back as soon as that's possible...

Saraiah

#3 Stefan_Pierre_Poulin

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Posted 03 December 2010 - 10:24 PM

Saraiah - Sorry for the delay in writing you back. I did call the number you recommended me on two separate occasions both leaving messages, however never getting any calls back yet. I am unsure if it is they are to busy down there for me or, just could care less. Anyways, I have been running into much difficulties as of late. Not physically, I would say I continue to have great gains week in and week out. I will post on a new board to allow for everyone to see the new post. If you cannot find it write back and I will send it to you -Stefan



#4 Saraiah

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Posted 03 December 2010 - 11:05 PM

Stefan - I went to the Connecticut P & A website, and see that they've got a division and phone number for people getting Social Security benefits. I'm wondering, since you've got Medicaid, if you or your mom are on SSDI, or SSI by this time, as well? If so, you could also try the 860-297-4327 number for the division of the Connecticut P & A agency that works with people with social security benefits.

Whichever number(s) you try, *keep trying*. There's always the possibility that somebody's out sick and things are falling through the cracks, or maybe the person who takes messages is not doing a good job of passing them on, or maybe the person who should be following up with you has a caseload that's too big. Be persistent; being insistently demanding, always in as much of a polite and cheery way as one can manage, goes far with underperforming and/or overworked agencies. Before I had to go out on disability, I worked for a number of nonprofits that were contracted to government agencies to provide services of one kind or another. One thing I learned was that as long as clients were appropriate and civil, the people who consistently made noise and demanded their rights got them. It's a strategy that I recommend.

#5 magpie

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Posted 04 December 2010 - 12:42 PM

So sorry for all your difficulties, I can't imagine how frustrating and painful this must all be. One suggestion I have would be to contact your Congressional Representative's office. Congressmen have COnstituent Services Depts and they may be of some help to you and maybe cutting through some of that red tape. The other thing is to be patient, but advocate for yourself. Times are tough all over, and more people than ever are applying for disability. That doesn't mean you should just wait for them to get back to you, but don't give up on the system. It is just overwhelmed right now. You may also want to look into legal assistance in applying for your claim. I'm sure Yale or another law school in your area offers some sort of free legal clinic that helps with Disability applications, might be worth a try.

Good Luck

#6 SleepingPhoenix

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Posted 28 December 2010 - 02:57 PM

Hello dear:
Regading these questions I can answer for me as a narcoleptic and as all the information I have found so far, and questions I made to my doctors:

Does anyone with Cataplexy Still feel like nights are very difficult, and it is like the meds only help you barely make it through the day??
Meds are not necesarily perfect, every narcoleptic is different and achieving the right dose of the right drugs is difficult to do, take time and lots of patience. Also in my case some meds, did not work after three days, others after three weeks, so far, they don't fix me all, but at least I can feel alive, and be mobile.

When you are having an attack does one of your eyes move uncontrollable and you get dizziness in your eyes, like you have just been punched with a haymaker and are dazed for a second?
My eyes roll back and get dizzy all the way. Worst my neck starts to hurt as if I was hit by a 2X4 in the back before I black out. Afterwards, its bad too, since most of the time I end up in an incomfortable position I end up having spams, neck bulging and pain all over.

Does anyone know what causes you to randomly develop all of these out of nowhere?
For what I have read, many factors. Some articles say that it is autoimune, to say it in plain English your own body attacks part of your brain. Other articles say that it may be caused by trauma, excesive bleeding, hormonal failure (supradrenal or something like that) other that it is genetic. Mainly a combination of factors along with stress, obesity and age, therefore they are not sure either, but they are looking.

Will I ever be 100% or is my life changed forever?
My doctor told me that this can last from 6 months up to one year and it would be idiopathic hpersomnia and if it last longer that that then it is narcolepsy. In several articles I read they point that sometimes symptons diminishes after age 60. All I can do is hope and pray. Yet, it is not the end of the world, I have the condition, I live alone, sometimes is good, most of the time is bad, the way you deal with it is important, specially when you have your parents as helpers. I like to think there is a reason for this, and I must deal with what I have right now, if I want to keep going. Still I don't think any employer has the right to fire you for being narcoleptic. In any case, you should cansider communicating with the Human Resources Department of your State and make sure that your rights as an employee with a disability are not being trampled. The only way your employeer can claim their decision to dismiss you is by statiing that your work tasks require a precision that due to your condition you cannot perform. Still the must move under the ADA and transfer you to a position in which you could continue to work, not fire you. That is discrimination. Also seek an interview with a work/labor Lawyer to seek options, should you proceed against the company that fired you for this.

Does anyone regularly try to go to the gym, or should I stay away from regular activity to let my meds do work?
My doctors recommended me to walk daily. The first weeks it was impossible due to the weakness the cataplexy causes and the constant dizzines due to sleep attacks. But as I started to wake up with the Ritalin, later with Provigil, I notice my legs were coming back, therefore I started walking and doing simple exercise to rehabilitate my body and to see if i can loose a few pounds, since the doctor said that can help. Also the blood circulation on your body improves so you'll be more alert, and will sleep better at night than if you stay only on meds.
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One thing I want you to never forget. You have a condition that can limit you. Only you can decide how much it is going to limit you. It doesn't matter how long it takes to achieve your goals, if you keep at it you will make it. Don't let anyone tell you that because you are narcoleptic, you are some kind of a problem. In any case they better adapt to your situation. To give you an example I have been fighting with a famous pharmacy since the beggining of this month, because they did not wanted me to provide me my prescriptions, because the pharmacist thought I was providing a false prescription to sell these kind of meds in the street. (Amphetamines - are calles speed on the street and worth a lot) Due to her very "objective" claim I was a couple of days without medication and started to have heavy sleep attacks at least three times a day, and lost workdays and my sleep routine got messy.
I decided not to get angry not scream at her though she deserved every word I could have say to her. I simply got to the homepage of the pharmacy went to customer service, made a formal complaint, stating the violations they made agaisnt me as a patient, punitive damages, the fact that the doctor had to rewrite prescriptions to please the pharmacist. and overall as a human being. They called me 24 hrs later saying they were very sorry and they offered me special treatment at the pharmacy, so I wouldn't be mistreated again. Still it is not a huge success, but you have to make sure the people around you understand your situation and that still you are the same person and deserve respect and the help as any other patient does.