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» LymeNet Flash » Questions and Discussion » General Support » Update: Applied for SSDI, more ?'s

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Author Topic: Update: Applied for SSDI, more ?'s
sammy
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Does anyone have any tips to help me prepare for my appt on wed?

My doctor told me that I need to go ahead and apply for disability but I don't know what I need to do to prepare or bring to my appt.

I'm guessing I'll need my LLMD's contact information. Hopefully they will ask for my medical records because I do not have any copies for myself.

I was also going to make a list of my current meds/treatments and symptoms (why I cannot work right now). Does that sound good?

When I made the appt with the office they asked what my disability was. I wasn't sure what to say so I just told them that I have chronic infections, fatigue, and neuropathy. I guess I don't know what official diagnosis to give them.

I know that I have positive tests for Lyme, Babesia, Bartonella, Mycoplasma, and CPN. I also have testing that showed adrenal insufficiency, low IgA, hypothyroidism, gastroparesis, and neuropathy.

They also asked how long I've been disabled. I didn't know how to answer that either. I've been sick for 6yrs. When I first got sick I was unable to do my full time job so I had to find a different part time job. Then I got sicker and had to get a different part time job. This fall I had to take medical leave of absence and was unable to return to work. So it's kinda been a gradual progression.

I'm also wondering, what records should I request? When I first go sick my PCP did tons of testing and referrals to many specialists who then did more tests. They found problems but could not pinpoint the cause. All of that info should be in my chart at my PCP's office.

Since I started seeing my LLMD I have not had much contact with my PCP. So should I submit records from my PCP or just send the records from my LLMD as he has been my primary care provider for the past 2yrs?

Thank you all for bearing with me and reading this really long post. I greatly appreciate your help and any advice.

[ 04-23-2010, 08:01 PM: Message edited by: sammy ]

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greengirl
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Hi,

I've not made a disability application, myself, but have been researching how to do them since last summer.

Is your appt to make your application? And, is your appt with the Social Security Office, or somewhere else, like state or insurance co.?

If with the Social Security Office, there is information on their webpage about the information that goes into an initial application, that should tell you whether you need to submit your records upfront. You can even see a copy of the information, so you'll get an idea of what you'll be asked.

These comments apply to an application for disability to the Social Security Office:

Without a "defacto" disability condition (like, I'm paralyzed or have cancer, there's a list of them), it is important for you to focus on how you can no longer perform your work, as opposed to what your condition is. Be as specific as you can about your limitations. Then explain test results.

The reason for the length of disability question is that disability can only be awarded if the person has been or is expected to be disabled for one year. I'd go with the six years, with the explanation that it's been a progression and you've tried to cope with different work situations. That will probably help if your initial application is denied and you seek out an appeal.

I'd list both LLMD and the PCP, because they can show you've explored lots of potential causes.

Take care. I know this is such a hard decision and a daunting task. Please let us know how it goes.

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Keebler
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-
http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/13935

Resources for Disability, Insurance, Dealing with HMOs
-

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sammy
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Thank you greengirl and Keebler.

Yes, my appt is at the local Social Security Office. Unfortunately, I think that my appt may be with the person that I spoke with on the phone. He wasn't very helpful... lots of awkward silence, I asked a couple times if he was still there because I thought that my phone had disconnected.

It should be interesting. I'll let you all know how it goes.

And please, share any other experiences that you may have. I appreciate all the advice I can get!

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sammy
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Maybe I should have scheduled the appt for later in the week...
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TnFlowerChild
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Take your patience with you - "hold the Lyme rage"!!!

Can you get a print-out from the pharmacy(s) as far back as they can go?? Go down the list and make notes as to what each does to/for you (sleepy, can't operate machinery, allergic reactions, etc...)- and be sure cost is on there too!!

This list is important so that they can SEE that you are "disfunctional" and full of drugs or have tried many treatments.

I got the "silent" responses at times also and it is very irritating!!! If you are not satisified with the person you are dealing with you can ask for a supervisor.

Also... apply for everything they offer! If you don't qualify... so be it! But, you have to try!

Good luck!

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OptiMisTick
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[ 05-04-2010, 01:52 AM: Message edited by: OptiMisTick ]

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TnFlowerChild
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OptiMisTick,

All I can say is WOW!!! I sure wish I had this info when I first applied! (Denials and appeals it took almost 2 years)

sammy - this is FANTASTIC advise! It does seem a bit overwhelming, but it is important to have this knowledge going in - and if you are thorough enough you may get it without going through the denial-appeal process!

I have a girlfriend who was approved on the first go 'round - only 'cause she had a foot tall stack of medical records to give them to start with.

As a cop friend once told me "It isn't the story you tell... it's how you tell the story!"

Thanks OptiMisTick - this info should be "bronzed" somewhere!!!

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sammy
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Thank you all.

Clearly I am unprepared. I didn't realize how complicated this whole process is. Looks like I've got alot of work to do. I will take your advice and call to cancel my appt tomorrow.

OptiMisTick, thank you for all the links and detailed advice. It sounds like you have lots of experience. I greatly appreciate your help [Smile]

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OptiMisTick
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[ 05-04-2010, 04:43 AM: Message edited by: OptiMisTick ]

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Keebler
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-
* VESTIBULAR ? If you have ANY inner ear disorder (balance, tinnitus, hyperacusis) that may be considered as a separate condition. Depending upon the degree, vestibular disorders - alone - can be the basis for some help from SSD.

Your LLMD may know of a LL neurotologist or other vestibular specialist for you to consult - if you have any symptoms that seem to either be caused by or include this system. There are very specific tests for the various vestibular disorders.

* MCS ? Multiple Chemical Sensitivities can also be considered separately, depending upon the severity.

=============

All about EARS:
------------------

For those who are sensitive or pained by even normal or soft sounds (sounds not even at noise level):

www.hyperacusis.net

HYPERACUSIS NETWORK

---------------

Even more troubling that hyperacusis by itself, those with SCD have it much worse.

http://www.youtube.com/watch?v=f6vAkdGw8T4

The Musician who heard too much - Superior Canal Dehiscence

---------------

http://www.scdssupport.org/

SCDSsupport.org

==========================

Ringing, hissing, roaring, pulsating sounds or sensations in the ears:

www.ata.org

AMERICAN TINNITUS ASSOCIATION

=========================

www.vestibular.org

VESTIBULAR DISORDERS ASSOCIATION

-----

http://www.vestibular.org/vestibular-disorders/symptoms.php

** VESTIBULAR SYMPTOMS **

============================

http://en.wikipedia.org/wiki/Mal_de_debarquement

Mal de debarquement

==========================

Specific for LYME patients - lots of details about ears and what can help:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS

===========================
============================

Multiple Chemical Sensitivities - MCS or:

www.chemicalsensitivityfoundation.org/

THE CHEMICAL SENSITIVITY FOUNDATION

Click here to play Chemical Sensitivity: A 15-Minute Introduction

Click here to read the transcript of Chemical Sensitivity: A 15-Minute Introduction

www.mcsrr.org/1999Defn.pdf - See the 1999 MCS Consensus Definition

Click here (at the link) for the Selected Bibliography of Research Articles. - six pages of studies and articles on chemical sensitivity published in peer-reviewed journals.

Click here (at the link) for a copy of the QEESI questionnaire, which is useful for evaluating a person's level of chemical sensitivity or intolerance.

===================

www.ciin.org/

THE CHEMICAL INJURY INFORMATION NETWORK
-

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sammy
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Update 4/20/2010

I've been reading through all the links and advice that you all have given me and I feel even more unprepared and nervous now.

Do you think that I need a lawyer to help organize my information and represent me? Will that increase my odds of a good outcome?

When I canceled my appt last week the office insisted that I reschedule for this friday. I do not have my medical records or any kind of letter from my doctors.

I thought that it would be OK to just apply now and let them request all the records and documentation for me. I have an impressive drug list and all my doctor's contact information. I'm also working on writing down symptoms/diagnoses, how these things limit my ability to work. Now that I've read through all the advice and information that you all gave me I'm not sure that this is enough.

What would you do? Postpone again. Gather my records and try to apply by myself? Or get a lawyer to help?

It doesn't help that I have cognitive dysfunction that makes reading, processing, and remembering things difficult.

Thank you all for helping me again.

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Keebler
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What kind of appointment is this? Just to file? If so, go ahead and start the process.

They will be contacting the doctors you list. The doctors send the files. They do not accept medical records from patients - or at least will ALSO need confirmation of same from doctors' offices directly.

I may have mentioned above but if you have ANY vestibular symptoms, separate tests may help support your SSD request.

(See VEDA site at www.vestibular.org - and find the support group on your area for names for attorneys. Ditto if you have MCS, same process for finding atty. )

If you get an attorney, you need a Lyme Literate one. At least one who has had successful awards for CFS patients. Maybe one who understand whatever else you may have going on (if vestibular, MCS, or sleep disorders, etc.)
-

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OptiMisTick
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[ 05-04-2010, 04:44 AM: Message edited by: OptiMisTick ]

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sammy
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Thank you so much!

I feel better knowing that i don't have to have everything ready for the first appt to start the process. The person that I spoke with on the phone was not helpful at all. They did not tell me to bring or prepare anything. Just said to show up.

Cognitive dysfunction is a big problem for me so dealing with this has been stressful. I have a hard time staying focused, concentrating, comprehending, remembering, etc. I just want to do it right so that hopefully I will have a good chance at getting the help/benefits that I need.

So, do you think that I need be prepared with my diagnoses and a description of how my symptoms limit my daily activities/work ability? Or is this something done later?

Thanks again. By the end of this I may have an anxiety disorder to add to my list! Just kidding... [Smile]

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Keebler
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Rather than use the term "Cognitive dysfunction" you might fare better just using normal day-to-day language.

They don't care about diagnosis. And a dx of lyme will not help. Symptoms matter more than diagnoses.

They want to know what you can do. Can you work in an office, a phone job, delivering mail . . . is there ANYTHING you CAN do? For how long?

That is what they want to know. They will get diagnoses from your doctors. Don't worry about trying to please them, just be honest. If you wonder what you should say, just tell the truth. That is what matters most. The truth - in your own words.

Like giving a speech, just SHARE information and BE YOURSELF, as you are now. Sheer honesty is key.
-

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sammy
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4/23/10

I was able to go to the Social Security office to apply for disability today. Thankfully, the lady who helped me there was very nice.

She said that it would probably take a month or so before my doctors were contacted to request my medical records. Then it would take another 3-4mo for them to review everything and make a decision.

She said that I did not have to do anything else. Is this correct? Should I contact my doctors to let them know that I applied? Ask them to please send my complete records and any other forms or letters requested to confirm my "disabilities"?

I printed up a list of symptoms and how they affect my daily life to give to the SSDI people today. Should I send a copy of this to my doctor?

Any other suggestions?

Thanks again for all your help [Smile]

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lou
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I also am impressed with optimistick's posts and think it should be an article in Lyme Times. Please think about submitting it.

Don't understand why the SS office would insist that sammy come in at a particular time for an initial interview. And not to submit anything else? Is this a setup for a denial, not tell the patient to prepare a good record? Why couldn't she come when she was prepared?

How many doctors know the fine points of getting ss disability, and how many have the time to prepare the right kind of record? This seems risky to me.

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