Dysautonomia (Autonomic Dysfunction) Community
Disability
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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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Disability

I am just wondering how many of you have had to file for disability.  
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Avatar_f_tn
I am in the process.  Have been denied once and have filed an appeal using a lawyer.  Social Security sent me to a doctor who spent 5 min. on the exam and then stated "well your blood pressure is okay here today".  He did have to assist me to a chair after I felt faint after the squat test.  I'm sure my face was white too since I felt all the blood rush from my head.  After that he immediately left the room.  So who knows what to expect.
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Avatar_f_tn
Gee, I never thought of filing for disability as an option, as so many doctors and medical professionals have told me over the years that my SVT problems were "nothing".   Easy for them to say, as they're not the ones who have to live with the challenges that we deal with every day of our lives.



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967168_tn?1343732745
I filed for the first time back in Jan 2010, denied July 2010 so I appealed and had to refile and start over in 2011.  

Even though I have 6 or 8 of the qualifying problems in their blue book and medical evidence to back it up, I was denied - very frequent syncopal episodes where my heart stops, malignant heart arrhythmia's and Degenerative Disc Disease and OA in my spine and hips with bone spurs throughout my spine.

I qualified medically because of all of my health issues and documented fainting episodes even with a pacemaker/icd even fainted in the dr's office BUT my primary put down I was depressed due to my heart/ans issues and treated me once with Lexapro.

Mentally I was not approved and the SSA dr said I was too 'strong' to be going through depression over my health problems.  They said I could think for myself and keep a check book so I'm not 'disabled' by their terms.

Now the tricky part, because I had to work 10 hours per week to keep paying my health insurance no attorney would take my case and I spent over a year fighting SSA alone.  When my back worsened a few months ago I thought about quitting because sitting hurts intensely with bone spurs up and down my spine on both sides, so I finally quit last month.

Even though the SSA website says you can work XX number of hours and still qualify for disability this is not true according to the attorneys i've talked to - Binder & Binder is one of the largest SSDI attnys and would take my case if I quit working; so now I'm going to try and refile.

It's a very long difficult process if you don't have an attorney.  Good luck to those who do file and make sure you talk to an attorney first.
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1649405_tn?1366260626
WOW!!  I had no idea how hard it is to get disability.  The sad thing is I have seen people that are on disability just because they don't want to work and yet all of you NEED to be on disability and are denied......confusing!!!  I have POTS and am not very appealing to employers who want a reliable employee (understandibly).  My health sounds better than all of you.  I am very worried that if I were to need to go to work to help take care of my family there is NO WAY I could:(  God has always provided and I will just continue to trust in him!!!
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Avatar_f_tn
I filed back in 2008.  I loved my job, I made very good money.  My son is in college now and my husband's income has been cut drastically.  There is no reason I would not work if I couldn't.  I love making my own money.  But I had a severe fungal infection for 18 months that ruined my autonmic system and my life, and also developed thyroid cancer a year after and now autonomic neuropathy.  I just went to court and they turned me down again.  Judge said after the court hearing....well, you look great. Idiot! Didn't hear a word I said. The attorney spent 8 minutes with me before and knew nothing of my case.  NOTHING.  When I got the letter back that explained why they denied me...I was furious.  One comment, was, patient claims to have had thyroid cancer but yet when the doctor felt her neck in 2008, no thyroid nodule was palable. Meaning they couldn't feel it.  He took a statement from a year before the cancer was found and you can't feel cancer in the neck.  So stupid!!  I was sitting there with a fresh scar on my neck and a paper that stated how much radiation I had, but they only used the statements that were to their denial of my claim. They said that I did have Autonomic Neuropathy and also admitted that my working ability is very limited, but that there was no reason why I would not be able to work at a ticket booth or a toll booth. I almost started laughing.  Ughh..where's the toll booth?  And I have been so sick, I haven't been away from my home for longer than a few hours.  Can't drive sometimes for weeks.  So I just got a new attorney, said it could be another 2 years to get back pay but they are hopeful.  Wow.  And I have to refile all over again.  It was so maddening...but I have to move on and try again. I've paid a lot in my whole life, can't believe they won't help me.  Wish I could work!!!!!  
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967168_tn?1343732745
oh Tbkimber I'm so sorry I've heard others with stories like yours.  Did you appeal his decision so you don't have to refile or do you get to go back to your first date at least?

I've heard Binder & Binder are a national firm and supposed to be great - I just contacted them, so I'll keep you updated on how they are with my case.

ANS problems are so difficult to prove it seems; even with medical documentation - unless you use one of the large clinics for some reason...Have you been to CC, Mayo or Vanderbilt?  Cancer should be easy to document if they provide the right papers, sometimes lawyers aren't so diligent though :(

I know what you mean, I was with the same company for over 10 years and worked FT until I had surgery.
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Avatar_f_tn
I just got denied the 2nd time.  So now I have to do a court hearing appeal.  Just spent a week in the hospital with bp's 200/100.  Had a cardiac cath after I failed my stress test. While in the hospital my bp's ranged 90'/60's to 200/100.  Cardiologist wrote that it was getting very difficult to control bp's. Also sprained my ankle a month ago during a syncopal fall, but so far only my internal medicine doc says I am disabled, even gave me a handicap sticker for my car.  But Social Security said I was too articulate and still able to do my own care so I can work!  Just because I am educated and take all my meds on time and follow up regularly with all my doctors(internal med, cardiac, endocrine, GI, foot, and psych) and can wash myself!!  I knew a guy who got disability because one leg was shorter than the other. I didn't know I had to be dumb to get help.
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Avatar_f_tn
Hi LIsa,
I finally got a lawyer to appeal the case.  He said it could take about 2 years, but to file in the mean time.  So crazy.  I went to Mayo and they are still in the middle of running more tests.  But Idiopathic Autonomic Neuropathy was diagnosed so far, but they think it might be autoimmune related.  So I should be going back soon for more testing.  I loved Kessey's quote that a guy got disability because one leg is shorter than the other.  That's wild.  IT's a messed up system.  They said I was too articulate too, that's funny.  What does that have to do with being sick?  I don't get it.  But I will keep trying.  
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967168_tn?1343732745
I don't understand it either...I wish I had gotten an attny from the beginning; that's one piece of advice I give anyone now who asks about SSDI.
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