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How do people with out health insurance get treatment for dysautonomia?

How do people without hralth insurance get treatment for dysautonomia ? I am a stay at home mom. My husband works nvery hard to support our family of five. I don't know what to do. Even if I had the money, my doctor has the samr disorder and went on permanent medical leave. I don't know what to do.
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Avatar universal
I may have missed something so let me know if I did.....Have you applied for SSDI?
The original paperwork can make the difference of getting approved or sent to appeal.  I was approved without a lawyer and without appeal (but before AD, mine was due to a car accident and back issues and the job I had) BUT I just had to "re-certify" and after over 20 hours of someone helping me be very detailed in my paperwork (no I am not kidding 20 hours split up working together, not to mention all the time I spent getting stuff together separately)
I left them no doubt I was unable to work not only because of my back but all the new fun stuff I was dealing with.
(my almost x not so darling husband reported me as being fraudulent so this was a very extensive review, I had one prior that was one page, I want to include this so people don't panic thinking reviews get this hairy normally)

Before I go on and on abut what to do, I am reading you have yet to apply? I'm reading it that you haven't.
Also there is a thread floating around the forum about a book you can read online

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Free-NDRF-Handbook-for-Patients-with-Dysautonomias--written-by-Dr-David-S-Goldstein--MD--PhD-and-Linda-J-Smith/show/1356864

I want to swear it talks about getting SSDI.

If you want some ideas send me a PM, in case I miss this thread and your response.

Lastly for us "rich" people (LOL) who don't qualify for medicaid, at least in FL they DO have a medically needy program with in medicaid that after your out of pocket reaches a certain level you can have medicaid kick in for that month (Tonya if you are reading this I bet this is what you have, it was a hospital visit that got me this and it's good for a year until you have to re certify, and one hospital visit can do it and the hospitals want to get paid so they do the "dirty work" for you).  
For me to meet my monthy out of pocket expenses I have to get to the point where I would have a little more then $100 a month to live on for both myself and my daughter.

Good Luck!
Kerri

OHHH Call around your local area and see if they have a free clinic, we have an amazing one here, it is not government sponsored, I know someone with a not common medical issue and she ends up seeing the best of the best, the local big wigs here like to say they donate their time to the clinic to "pad" their status.
Helpful - 0
967168 tn?1477584489
make sure you do SSDI quick and try to find an attny to help you through the process it will make it much easier and will help your case - they're only allowed by law to get a certain amount no matter how much back pay you get

I started my claim Jan 2010 and am still waiting for my 2nd appeal even though I did all I was supposed to do and my dr's sent in the necessary forms for me.  My problem is we own a small business and when I got really sick, we cut my pay in half so they say we can always just up my pay again with no problem even though you can work and make up to $1,000; I made 600 which was just enough to pay my insurance.

I talked to several attnys and they told me that if you make anything you will be turned down for SSDi; which is exactly what happened; so we stopped my pay and I lost my insurance - cobra was crazy.

For those of us without insurance, if we wait 6 months and if you have a previous medical condition that you can prove you were turned down for - you can buy into the Pre-Existing Condition Insurance Plan PCIP state/federal plans.  

For me, age 43 here in FL is $435 monthly; which is about what I paid for a group plan and the plan seems to be pretty good coverage wise.

here's the info: https://www.pcip.gov/StatePlans.html

If you're turned down for ssdi doing it on your own, just keep following each step they tell you to appeal and make sure you keep accurate records.  Also, I think in my journals I have RFC disabilities forms or you can google them and get your dr to sign and send to them.  The average wait is 4 years I think, and then you get the money in a lump sum from the day you filed (if I remember correctly :P)
Helpful - 0
560501 tn?1383612740

    I know it's hard coming out of the work place when you are / have personalities like ours  (Go Gadget Go!)  Lol

    Yep! do Not give up on the SSD....it may take a couple of Appeals (usually does) but don't get discouraged :)

~Tonya
Helpful - 0
612876 tn?1355514495
Definitely keep fighting for the SSDI!  Getting on SSDI was what has gotten me through, for sure.  Where are you in that process?  Is this your initial application, or are you appealing?

-Heiferly.
Helpful - 0
Avatar universal
I was a vetenary assisitant, and pharmacist assistant {Workaholic}. But I had to quit every job that I ever had because of passing out.I haven't worked in 6 years. It wouldn't be so bad if I was a lazy person. I am definately the exact opposite.I fight the symptoms till I can't fight anymore. But I have decided that if I'm going to have to be home longer, I might as well try,try again to go on SSD. My hubby works his tush off to support our family, while calling to check on me and the kids and then comes home and helps with the kids. I might as well keep trying for the SSD. Maybe I will not stress a much about making ends meet!
Helpful - 0
560501 tn?1383612740

    I had to stop working about ....I think around 3 years ago?..maybe 2 1/2...
First I went out on FMLA and milked that, then contiuous Doc notes..then Finally, I knew I had to end my career because of the severity of cognitive mistakes I was begining to make.

    I used to be a Confinement Officer at a Florida State Prison. No room for error there!
Plus, I was getting a bit tired of the actual 'Force" (physical fighting) I had to deal with the inamtes. I figured if I was going to be in fights...I would join UFC and get payed bigger money for it...Lol

    Are you currently applying for SSD?
~Tonya
Helpful - 0
Avatar universal
I hear you on the $ stuff. It is so hard.   Were you working previously?  If so you may be eligible for Social Security Disability?  If approved, you could have insurance, e.g Medicare.

Laura
Helpful - 0
560501 tn?1383612740

   Good Luck. I hope you get some 'Good" Results :)

Take Care,
~Tonya
Helpful - 0
Avatar universal
Thank you so very much! I have applied for medicaid and ofcourse I was told the same thing, even though we are scrapeing by. But I never thought of the Health Dept. Thank you. I will try first thing in the morning. Thanks!
Helpful - 0
560501 tn?1383612740

   Hello Fellow Floridian :)  Welcome to the AD Forum.

    You know, your question is a good one and one that many of us face. Yep, Including me!  my BC/BS ran it's course but the COBRA was going to be so much that there was No Way we could afford it!

    Have you tried to apply for Medicaid? I know some folks are ashamed to be on or to have Mediscal assistance throught the state BUT......Your Hubby works hard and pays his taxes so guess what......You are entitled!  

    I recently tried to get it but they said our income was to much. I said...You have got to be kidding me..We are barely scrapping by!  I did have it though when I was hospitalized last year. I guess the hospital had a way of getting through the red tape to make sure they got their money!

    What about a Local Health Department? From what I understand, if you go for an appt there and they see that you need some further testing...they will refer you to a specialist and you would not have to pay.

    Good Luck to you.
Let us know how it goes or if you come up w/ any ideas ;)
~Tonya
Helpful - 0
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