Narcolepsy Treatment Via Telemedicine Needed

2 posts in this topic

I am originally from Maine and resided in Arizona for 1 year and wish I never left as the provider I had "Gave me HOPE" he was a India immigrant (My dad was a immigrant also to this country at age 20) this doctor never treated Narcolepsy and I was his 1st patient BUT he witnessed the devasting symptoms in India, he I am sure saw a lot of suffering over there as I witnessed with our family with 7 children and how we were treated because of my dad's ethnicity.

I think that is a big reason I became a nurse and not to brag I was a good one that would not take care of a patient without researching the diagnosis/drugs and any other relevant care for me to do so otherwise put the patient at risk! I have seen nurses and doctors that they can not be into the career but for $$ and prestige.

I am in Florida and thought it would be similiar but this is becoming a nightmare with the DEA, pill mills and doctors too many that I mentioned and they are pleniful and for me useless except to charge me $200 visit despite I have Medicare and Champva.

Know Mayo in FL can not see me.. Injury after injury I have succumbed to and I am 56 and can not get anywhere with any agency..

Telemedicine should be at our disposal thru a local MD or how ever it is done.. I really feel in my situation there are no other options and I really can not thru another disappointment like denied surgery for injuries from undertreated symptoms.

How do we go about adequate care from the doctors who understand and are educated in this incurable disabling disorder


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Cathy~I would love to talk to you in an email~ Im in FL too and NEVER have had a bad narcolepsy dr. Ive moved some, so I have had 4, ONE being a charity based organization, dr who volunteered, he was so amazing! Anyhow, my last dr, in VA put me on nuvigil, never had a problem getting it. ITs SO expensive. I had to stop a few months later, because I got pregnant! WE are in our 30s didnt even think we could because we tried so long- apparently this drug did something to my system to make that anyhow, had the baby, now need to work- GOT to get back on meds.. my husband does not have insurance yet at his new job, SO Im on medicaid- THEY will not cover this medication, unless a DOCTOR does his job and puts through the info to medicaid. This doctor is also from india and will not do the pre auth correctly, so because Im so desperate (I have stage 4 classification of narco/ cataplexy) and I need to be working- he put me on adderall which is covered by med. I had that years ago, but started on a dosage of 30 mg/long term in the morning. 10/mg take as needed in the afternoons, and trial/ error of antideps for the cataplexy.. my condition according to my last sleep test has worsened, adding a some apnea. This doctor gave me 5mg of adderall- and called it a day. I have never in my life cried or fought with a doctor... I wanted to slap this guy!! He said that cataplexy doesnt need a medication (Whhhhatt?) and that 5mg is the max dose he can give me.. I live in st. petersburg. Im trying to get in touch with my previous doctor, to get his help. Its a nightmare, I started work on tues and got drowsy during orientation, we cant afford for me not to work :( Ive been denied for disability 4x. :( I dont know where in fl you are, but if you find someone good, please let me know, maybe they can gvie you a couple names of people here in st. pete that can help me?

God bless..

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