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Narcolepsy and underweight

Jackie F.
on 9/10/09 1:59 pm, edited 9/10/09 2:05 pm - Randolph, ME
The last 9 months have been hell for me, thats why Im never around.
Ive been having problems staying awake, depressed, lazy, etc
Im NOT a lazy person and very motivated and I really started to think it was all in my head and I was going to lose everything. I kept saying I felt narcoleptic but I didnt want to pu**** to look crazy too because I sure felt it. Well finally after 9 months and finally getting a sleep study, sure enough I am. I dont think its because of the surgery at all. Maybe part of the shock to my body losing so much but I know its from stress too and the more I read the more I realize symptoms started about 2 years ago.
Anyways Im having a problems with the medicine and my weight now. Im down to 117 lbs now even with my skin at my height 118 is underweight. Everyone keeps telling me how gross I look and a friend of mine even told me another friend told her I look like an AIDS victim
The ritalin Im on now for narcolepsy actually makes me eat more too believe it or not. Now on top of all this I have found the medicine that I think will work best for me I think and my insurance denied the preauth for it!!!! I started with the tablets and they didnt seem to work well at all. So i tried the liquid which cost the darn company a grand for a months worth, yes $250 a bottle and thats generic! No questions asked. The liquid though is tearing up my insides and I have had gas bubbles and the runs with horrible gas for 4 days now I believe. I found this patch that you just put on your hip and it gives your dosage so much an hour. I dont have to worry about any of the digestive part of it. This way we can know exactly what dosage Im getting because with a stimulant youre supposed to very closely monitor it.
Keep in mind this would have cost them $115 a month as opposed to $1000...nope they denied it and said its only for ADHD. Well its methylfenadate or however you spell it, ritalin is easier anyway what should it matter the form? they approved the other ones but not this one when its way cheaper? How can one be only for adhd? All it is is the medicine in the adhesive. PLUS this way I can get it gradual all day instead of take medicine, get tired, take medicine go back up, get tired, etc. I dont wanna be on a stupid roller coaster all day I wanna feel as NORMAL as possible. The pharmacist even said that would be my best option.
Im so mad at them I want to scream and it almost makes me wanna say Ill deal with the ****s all the time so they have to pay out 1000  a month now. I know they sure as hell arent getting 1000 a month for my coverage so they will lose money on meeeeeeee.
If you ever have to use medco, Im sorry for you. They suck!!!!!!!!!!!!!
Im going to appeal it now. They said I can do an emergency appeal which takes 3 days however if its denied, its denied. No turning back.  If I do a regular one, then I can reappeal. That makes no sense. They are incredibly stupid. Worst company I have ever had to deal with in my life.

Medco =

Is there anyone out there that has narcolepsy too? Or knows someone?
Im trying to get as much information as I can to beat this and get back to work, its killing me!! 
Michelle B.
on 9/10/09 8:32 pm - Augusta, ME
Are you seeing a sleep specialist for your narcolepsy?


Consult weight 235   / Day of Surgery 191   / Current 133 / Goal 125

    
tiggrpt
on 9/10/09 9:26 pm - Sabattus, ME
Sorry to hear all you've been going through!  I don't have any answers for you, but I sure hope the docs and insurance company can start working with you to get you what you need!  All my best to you!!!!!

Ruth                  "It's never to late to LIVE HAPPILY EVER AFTER!"

   
Kelly S.
on 9/11/09 1:35 am
Keep fighting that insurance company.  If you have to call the top, or the employer's office that you get it from.  They are dirty little *******s and will do anything to not pay for something.  Good luck! 


20 pounds lost during two week pre-op diet.

twcamber
on 9/11/09 6:24 am, edited 9/11/09 6:24 am - Rockland, ME

Dealing with insurance companies are a pain in the A$$.  Can your PCP diagnosis you with ADHD or ADD?  It might be worth a try.  Anything may be possible.  What about calling the drug company direct and asking if their are any programs for free meds.  Sometimes they have low cost of free prescriptions.  Here are a few sites

PfizerHelpfulAnswers.com or 1-866-706-2400  for drugs made by Pfizer

AstraZeneca-us.com/help-affording-your-medicines

Merck.com/merckhelp  or 1-800-727-5400

The partnership for Prescription Assistance 1-888-4PPA-NOW
 




Weight includes 21 Pounds lost on 2 Week Pre-op Diet
 




 

Mamere
on 9/15/09 12:21 am
I'm so sorry you are going through this. You might want to get in touch with the State Insurance Commissioner for Maine if you are denied. They have power over the insurance companies and even mentioning that you are going to contact them might help, if you do it in a non-threatening way. Something like, "Gee, you denied this?  I'm so surprised and I need this medication badly. Should I go through an appeal or would it be quicker for me to just contact our State Insurance Commissioner?"  Maybe that will light a fire under them!
pat
Jackie F.
on 9/15/09 2:44 pm - Randolph, ME
Oh good idea....I dont think it will be a problem, but Im going to call back and leave that little message on there because the appeal hasnt started yet...not sure if she sent the fax yesterday or today

Thanks!! 
missi B.
on 9/20/09 12:19 am - danville, ME
Jackie, Sorry to hear about all of your troubles.  Good luck and let us know if we can help in anyway.  Take care.  Missi
 


 

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