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» LymeNet Flash » Questions and Discussion » General Support » advice needed – applying for SSDI

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Author Topic: advice needed – applying for SSDI
Member # 42590

Icon 1 posted      Profile for kara     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi all,

I will be applying to SSDI soon. I have a number of disabling symptoms, including pain if I use my hands much or walk much. But before I saw my LLND, I only had a diagnosis of thoracic outlet syndrome from a few doctors for the pain in my hands, which is already a non-mainstream diagnosis. No other doctors could find a physical explanation for any of my symptoms, and strongly suggested they were psychosomatic.

I know how strongly doctors' reports and diagnoses help in an SSDI case. Given the controversial diagnostic criteria and treatment protocol for Lyme disease, do you think I should apply for SSDI with or without a Lyme diagnosis? Without it, I have a thoracic outlet syndrome diagnosis and a possible psychosomatic diagnosis. But, I know that the mainstream diagnosis for Lyme includes a positive Western blot result, which I do not have. I also know that the mainstream treatment protocol only lasts 10 days, which is probably much shorter than the amount of time I need to recover. Any advice would be great!

Much thanks!

Posts: 25 | From Berkeley, CA | Registered: Oct 2013  |  IP: Logged | Report this post to a Moderator
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Member # 25116

Icon 1 posted      Profile for MamaBear11   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I received my SSDI based on my symptoms and how they limited me from doing jobs that were available to me (given my education level & training/experience and the local job market/availability).

For example, my highest level of education is high school graduate. A typical job for someone in that category would be fast food worker. But because I take several naps throughout the day because of my extreme fatigue, the Vocational Expert at my SSDI hearing told the judge that I would not be able to keep a job like that because no manager of such a job would allow me to take multiple breaks for naps.

It is all based on symptoms, not necessarily a diagnosis.

And when you are answering questions, either on the forms you have to fill out to apply or at the hearing in front of the judge, be sure to answer each question as you would on your WORST day.

Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

Posts: 310 | From Northeast | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 19922

Icon 1 posted      Profile for Rivendell     Send New Private Message       Edit/Delete Post   Reply With Quote 
I would go with whatever doctor has the most office notes, tests, clinical diagnosis, and support of your disability case.

If that is the doctor that diagnosed the thorarcic outlet syndrome, then I would use that diagnosis and get your doctor's support.

If you are seeing an LLND, then you can include the naturopathic doctor, but the SSD wants notes and diagnosis from a M.D. So it is important to have a medical doctor's support.

Visit the site for James Disability. Lots of good info there. Also the site for Scott Davis - read his articles - so good.

"Disability Secrets" is another good site.

You really need lots of preparation when you apply, so you know what you are doing. SSD is looking for all kinds of ways to deny your benefits. So study these websites.

Also, if you are depressed or anxious or having memory problems, mention this on the form. If you are not seeing a therapist, SSD will send you to one for an evaluation. It is important to be honest with this doctor about how the illness impacts your life on all levels, including psychologically.

If there is any doubt about your case with the SSD, having psychological impacts from your illness will help to push your case on through and win.

Good luck.

Herbal Treatments for Lyme and Co-Infections:

Posts: 1358 | From Midwest | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 38323

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I'd talk to a disability attorney. I had a ton of diagnoses for various problems and still didn't get awarded SSDI for 4 years after a ton of appeals.

You can submit submit reports from several doctors. It doesn't have to be just one.

Finally hired an attorney and he had the doc fill out a daily living questionnaire (asks stuff like if you can lift and hold things) and used a vocational rehab. report.

SSDI was more based on how employable I was and if I could actually work a job. This was before Lyme.

If you could even get a chronic fatigue diagnosis, that would be helpful.

A disability attorney won't charge for a consult. They don't get paid until you get awarded.

It would have cut through some red tape if I hired one earlier.

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (5K+ posts)
Member # 2022

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kara, you can use the search icon on top of this page. Click on search, put search words in SSDI or SS disability as example,

click on general forum, where most of the threads might be-but also search in medical forum

any date

click search-patient while the program searches for the all threads with your search words.

Probably hundreds/thousand of threads will pop up using the latest date going all the way back to '05(I think that the earliest threads on search?)

The most detailed threads are on the tagged/sticky threads at the top of medical forum and general forum you will see threads that have all the most important urls, info etc. Scroll thru looking for disability urls.

Included in some of those sticky threads are step by step on disability process.

Yes, hire a lawyer as soon as you are rejected. Some state laws are lawyer may be hired after/when the initial SSD is denied.

Lawyers are worth the money they get out of your back pay check. They are only allowed a certain % by laws. My goodness SS will lay the paper work on you and weed out as many as they can.

It is so overwhelming. It used to take me days and days to fill out one set of papers they sent me to fill out. I would literally be down from 2 hrs of just trying to answer their questions.

It is mentally, emotionally, spiritually exhausting to try to complete all on your own. Especially once you get past the telephone interview and the paperwork starts.

It is like standard procedure to reject everyone the first step/process of it. Yes, some have been granted right away.

Those are the exception and not the rule. I believe there are even tips on how to hire a disability lawyer in those sticky threads.


"Never, never, never, never, never give up" Winston Churchill

Posts: 6444 | From Louisville, Ky | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
Resources for help when disabled:

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
LymeNet Contributor
Member # 29410

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Interesting article in NY Times yesterday about mental disabilities and SSD fraud. They even mention intercepting phone calls.

Posts: 790 | From Somewhere | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
Honored Contributor (25K+ posts)
Member # 12673

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Sounds like a ton of dishonesty going on there. [To clarify: in the article about about fraud, not regarding this thread]

It's good to stick with what we learned in grade school: honesty is the best policy.

I know it's often not enough to just be honest about symptoms with lyme as they can be so very severe and considered unusual to most doctors. The flucuations can also be confusing, even to us. Still, just be true to what is happening for you at this time. Be centered as you move from Point A to Point B, etc.

Hold onto to your dignity but also realize it's okay to ask for help from a program that you have paid into, this is disability INSURANCE, after all.

Get good advice on what points matter and just be honest. Also do still hold hope in your heart that in the future, health will return.

[ 01-09-2014, 01:46 AM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Member # 9197

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Hi - I'm pming you with a referral -
Posts: 13068 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
From what you have described here, it doesn't sound like you have much of a case. Of course, I don't know all of the facts.

Disability is based on what you are unable to do.

Opinions, not medical advice!

Posts: 95652 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator

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