Newly diagnosed Social Security Denied

Status
Not open for further replies.

kellykago

Active member
Joined
Feb 11, 2012
Messages
63
Reason
PALS
Diagnosis
12/2016
Country
US
State
CA
City
Fairfield
I was diagnosed in Dec 2016 and I applied for social security right away. I received a denial letter already stating "Though you do have discomfort, the evidence shows you are still ale to move about and to use your arms, hands and legs in a satisfactory manner." and "your condition results in some limitations in your ability to perform work related activities. We have determined that your condition is not severe enough to keep you from working". I applied right away, based on the sticky that ALS is a TERI qualified illness. I want to be prepared.....

Am I supposed to work until I am useless? Any suggestions? I'm worried about surviving financially. I have bulbar als, but I fatigue easily and need naps more than usual
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Get all your medical reports together, birth certificate, marriage lic3nee and ssi card. Make an appointment and go to the office. Include a letter from your doctor saying you have als, a progressive, terminal disease.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,758
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Very sorry.do what Steph said but also Read through the medical reports that you gave them originally. I know there was initially a question on your diagnosis and I wonder if they failed to look at the most recent note? Also in the most recent note did it just say ALS or did it talk about El Escorial criteria which are horribly confusing. ALS in one area is called possible ALS which the reviewer may have thought was the same as saying maybe it is ALS I wish they called it stage I or something instead

You have stopped working? If you had not you would have got a different kind of refusal. No matter what your diagnosis if you are working and earning more than a pittance ssdi is automatically refused

I think I would also print out the information from the ss site on TERI illnesses and the page where it says ALS is one and take it with me

Good luck. Let us know
 

KW1234

Distinguished member
Joined
Sep 28, 2016
Messages
269
Reason
PALS
Diagnosis
10/2016
Country
US
State
OR
City
Hillsboro
Echoing Gooseberry.. I applied the day after my diagnosis in October and was approved. They contacted my primary neurologist and he provided documentation. I also had a person in the local SS office who was familiar with ALS and helped make sure it was processed. My speech is so bad I think she felt really sorry for me. I do think though that having a champion in the SS office is critical.
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,189
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
We just had one piece of paper, a letter from the doctor saying diagnosis ALS. I put a cover letter on top, reminding SS that this should be expedited and automatically approved under the TERI program.
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,365
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
This was an error for sure. ALS is an automatically approved Dx.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,775
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Thanks to Mike, I did the same thing he did for his wife except I included all the MRIs and blood work ruling out mimics. My doctor wrote a simple letter. I can't find it or I would upload it. He did state that I had ALS. I put a BIG cover letter with RED LETTERS saying that I qualified under the TERI program. I was approved in less than two weeks and approval was backdated to the day I stopped working.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,184
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
As others have said, this is a mistake.

If you are not working and if you have ALS and if you have contributed to Social Security long enough to qualify for benefits, you should be covered.

I was diagnosed with MND rather than ALS. Although I did not fall under the TERI guidelines (as far as I know), I was approved in just a few weeks (without an appeal).

I did use a lawyer for my application. Fortunately, a friend at church is a lawyer with experience in this area and offered to help me out. Perhaps you can do likewise.

For ALS, the approval should be automatic.

Follow the advice others have given you. I am very sorry you have to deal with this on top of all the others things that go on with an MND/ALS diagnosis.

Steve
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,538
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Do you have short term disability benefits? My husband went out on disability and we filed for SSDI months later. They started his six month wait as of the first day he was "unable to work"--his first day of STD.

Perhaps the problem is that you are still actively working? Anybody else have insight into that possibility?

Becky
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,775
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I did the same thing that Becky's husband did. I want out on STD which carried me from August 2015 to March 2016. My LTD and SSDI both kicked in before my STD ended and both were based on my last day of work in August.
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,538
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Having reread your post, I'll add that no, you don't have to work until you are useless, but you won't get approved for benefits while you work. Start with short term disability--you should be eligible for that right now.
 

kellykago

Active member
Joined
Feb 11, 2012
Messages
63
Reason
PALS
Diagnosis
12/2016
Country
US
State
CA
City
Fairfield
what were you initial symptoms? I feel since mine is bulbar, they are denying me. I know my dr said that I need to conserve energy and over exerting or pushing yourself can trigger faster progression. For me, work was demanding and stressful. I cannot handle it....
 

kellykago

Active member
Joined
Feb 11, 2012
Messages
63
Reason
PALS
Diagnosis
12/2016
Country
US
State
CA
City
Fairfield
I am not working and have not worked since Sept 2016. I have private disability, which I was on, while waiting for a definite diagnosis. Once my diagnosis was definite, my disability company requires me to apply for social security and disability retirement, which is what I did.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,758
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Since you have stopped working if your diagnosis is ALS then this is wrong period. Bulbar or limb onset should not matter. doublecheck that your diagnosis is clearly stated in whatever records you gave them. If it is not get a letter from the doctor clarifying. It can be short. Go to the social security office. Tell them you applied for a TERI illness and you need this expedited ASAP. TERI illnesses are supposed to be priority so you should not get bogged down in a lengthy appeal. Good luck
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,565
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
OK
City
Cleveland
My PALS also has Bulbar Onset. He quit working in Dec '15 on short term disability. Before that ran out, we applied for Social Security because our Disability Insurance Company required it like yours. It took about 3 weeks for the approval and the waiting period started the day after his last day of work. LTD and SS started in June '16.

I would get with your neurologist and verify that the paperwork they turned in showed a dx of ALS. I would get paperwork from them stating the dx and go tot he Social Security office as everyone else has stated. Someone has made a mistake somewhere.
 
Status
Not open for further replies.
Top