Dysautonomia (Autonomic Dysfunction) Community
D I S A B I L I T Y
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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D I S A B I L I T Y

Hi Everyone,

I was just told by my electrophysiologist last Tuesday that I am "disabled" and he will not clear me to go back to work.  He told me to hire a lawyer (since I'm 26 almost 27) and apply for social security disability benefits.  I am sitting here still in shock that my career is over.  I cried to the doctor (not like me) and he apologized and said that I am no longer fit to work.  I am a medical coder - the job is pretty sedentary - but highly stressful.  Since I only get relief of pre-syncope laying down and I can not sit too long or stand too long without passing out, plus my other symptoms I am deemed unfit to work.

My current diagnosis are as follows:  Severe POTS, Inappropriate sinus tachycardia, EDS hypermobility type 1, Chiari 1 malformation, chronic fatigue (due to those diagnosis), central vertigo, neurocardiogenic syncope, mild levoscoliosis, sleep disorder, herniated lumbar disk with degenerative disc disease neck back and thoracic radiculopathy, photophobia, unsteady gait, generalized anxiety disorder, panic disorder, and depression.

I would really appreciate any input from those who applied for SSD or those who are thinking this may be an option for them. I'm lost and scared in the fact that this is something I have to do. So anything you guys can tell me would be great.

Thanks xoxo  
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Avatar_f_tn
Oops, I meant to say....."After you're on disability FOR 24 MONTHS, Medicare kicks in...."

Sorry 'bout that.
17 Comments Post a Comment
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875426_tn?1325532016
I am on social security disability (which I applied for with the running out of state disability), but not for my I.S.T. and P.O.T.S.... if I could add more on, I would but was told if I wanted to do something like that, I'd have to reapply all over again or something.  

But I know what it is like to give up on going back to work and I know it is very difficult emotionally to come to terms with.  I'm sorry this has happened to you but know that you are still valuable as a person.  I'm so glad God still had plans for me after I became disabled and that my value is not tied to my ability to hold down a job.

You might want to look at this thread:
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Social-Security--Medicare--Medicaid--etc/show/1091637
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4703993_tn?1379771988
Thanks for the encouragement...

If not on SSD for IST or POTS.. do you mind me asking what you are on SSD for and at what age you applied?
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875426_tn?1325532016
You're welcome!

I went on it in relation to chronic, poorly controlled migraines and stress issues.  I was in my late twenties when I went on state disability (and when it run out, I went on SSD).
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4703993_tn?1379771988
Oh OK I see... well I had a phone consultation with my lawyer yesterday and she said she only takes cases she believes she can win and is more then willing to take mine.. She is going to send me out paperwork I should have it by Monday or Tuesday.. So I'm guessing I have to fill out a lot of forms and then I mail it back to her and she is going to start my case... Nervous already!
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875426_tn?1325532016
I did not use a lawyer for myself and I imagine you could probably get disability even without one, given your medical history, but if it makes you feel more comfortable to use a lawyer, go for it.
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Avatar_f_tn
J, I'm on disability but didn't use a lawyer to get it. In fact, I didn't even know that you could or should! I simply had three of my doctors write in and express why I needed it. It turned out to be simple in my case.

I also would have trouble holding down an outside job, but I do plan to do pick up some work here at home. Can't you do medical coding by telecommuting?

After you're on disability, Medicare kicks in no matter what your age. So that should be a much welcome help to your medical expenses.  :-)
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Avatar_f_tn
Oops, I meant to say....."After you're on disability FOR 24 MONTHS, Medicare kicks in...."

Sorry 'bout that.
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4703993_tn?1379771988
I only choose to get a lawyer because I am 26 years old.. I'll be 27 in May, but from what I heard at my age it is very hard to get approved.  My electrophysiologist and neurologist are both willing to fill out paperwork for me explaining why I am disabled.. and I am sure my primary will as well, but I am not sure if that holds much weight... Anyways if you don't mind me asking - how old were you when you filed?  and any advice you can offer would be very much appreciated.
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Avatar_f_tn
I was 57, I believe.

Are you sure that age matters? I thought it was really your physical symptoms that were the most important factors.

One of my doctors said that she had done this before, and knew what they were looking for. I don't know what that is, but I'll see if I can find out.

Good luck!
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4703993_tn?1379771988
Thanks...  Well my doctor and lawyer both said that social security takes age very seriousely when approving or denying your case.  I know that I am almost 27, but I feel 77 and I wish they wouldn't take too much time worrying about the age of the person applying.
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875426_tn?1325532016
I heard nothing about age when in my late twenties, I found myself needing to apply.  I did however, hear that if you have two or more disabilities on their list, that was an important factor when they consider your application.
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875426_tn?1325532016
P.S.  Once on social security disability, your case is typically subject to review at interval periods where they try to make sure they feel you are still disabled and not able to go back to work.  
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4703993_tn?1379771988
Thanks for the information... Well I am not sure if any of my illnesses qualify for SSD's bluebook.  I do have vasovagal syncope, POTS, and IST.  I thought I have read something about arrythmias and syncope... I guess I will just have to hope and pray everything works out... I wish I could work - thats what I want SSD to know.  I wish I could, but I can't...
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875426_tn?1325532016
I think they better recognize your disability!  God willing, they will!
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4703993_tn?1379771988
I hope so!!  I also saw a rheumatologist about my EDS and she said my joints were all mildly dislocated and my knee's and moderately dislocated.... so I just have to wait patiently and hope SSD wont let me down..
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875426_tn?1325532016
Yipes- that sounds painful!
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4703993_tn?1379771988
sure is!!... i cant take any strong pain killers like percocet b/c I vomit ... so she gave me tramadol... which doesn't really help that much.... ahhh soo frustrating..
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