Applying for Social Security Disability (SSI/SSDI)

[KitCat]

I thought I would get a thread going on this.

I am on Social Security disability for a CFS diagnosis.

I'm not an expert. I've been trying to learn as much as I can to help others through the process.

I've also learned from reading some excellent posts here from other people that know quite a lot.

Here's a place to post questions, thoughts, stories, and strategies.

 

[halcyon]

What sort of test results did you submit as evidence of your medically determinable impairment?

 

[KitCat]

Hi halcyon,

I applied quite a long a time ago. I am not the best example, I don't think I had many tests. Testing can be helpful, but from what I have read, it is not necessarily the best/only way to prove a cfs claims.

These are the tests social security officially lists as providing evidence in a cfs claims -- though it is a not a concrete absolute that one must have all of these tests or exactly these tests:

• An elevated antibody titer to Epstein-Barr virus (EBV) capsid antigen equal to or greater than 1:5120, or early antigen equal to or greater than 1:640;
  
  
• An abnormal magnetic resonance imaging (MRI) brain scan;
  
  
• Neurally mediated hypotension as shown by tilt table testing or another clinically accepted form of testing; or
  
  
• Any other laboratory findings that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record (for example, an abnormal exercise stress test or abnormal sleep studies, appropriately evaluated and consistent with the other evidence in the case record).

Social security also mentions mental status exam testing for cognitive impairments (usually by a psychiatrist or psychologist)

Here's what I have learned about tests from other people:

1. I have heard from other people whose claims were helped by neurological testing for cognitive impairments (I think this is done by a psychiatrist and may be a little more thorough than a simple mental status exam).
2. Some people feel their cases were helped a lot by a test called a two-day cpet. But it is expensive and sometimes risky so I can't really recommend it. It's a personal choice.
3. Some people with cfs are approved for related conditions such as fibromyalgia or mental health conditions, which have different tests
4. Function tests are often performed by social security doctors, and they are often brief and inaccurate. If can be helpful if you get a function test from your own doctor or someone your doctor refers you to (especially if you have read the report from the social security doc and you are not happy with what they wrote)
5. One person felt their case was helped by getting function testing done by a physiatrist (this is a physical medicine and rehabilitation doctor). I liked this idea. Function tests are often done by physical therapists, but I think a physiatrist would be much better because anything signed by an MD is a thousand times better for a Social Security claim.
6. Ongoing documentation by your regular doctor is extremely helpful. Your doc does not have to be a cfs specialist, but they do have to know what to document. You can learn this yourself and work with them on it.
7. someone here recently posted this excellent post about their experience with tests. I saved the post... but not the username (sorry!) but I copied the post below

Best people to perform tests:

1. Social security considers a document medical evidence if it is signed by one of these people: MD, DO, phd psychologist, psychiatrist. Test reports signed by other kinds of practitioners will be considered but won't carry as much weight. For example, a mental status exam from a therapist is very different than a mental status exam from a phd psychologist.
2. I have read that for fibro claims, testing by a rheumatologist is considered more favorably than testing by a general practitioner.

One thing to keep in mind about tests and records:

• Social security does not read everything in your records. Just because have a lot of records and tests, does not mean social security will collect it all, or read it all, or consider it all.
• In the dream world, your doctor would put together a medical source statement summarizing your test results and other records and giving their medical opinion. Social security will definitely read this and will take it very seriously.
• Most doctors have no idea how to do this and/or won't spend time on it (I have seen some really weird and really useless letters from doctors on this). You can make a big difference in helping this work better.

great post by someone whose username I have forgotten:

"My case was based on my physical limitations which are profound vs. a specific diagnosis which is what my atty advised us to do which worked. Each doctor gave their own opinion from ME/CFS and viral reactivation of EBV virus, to MCAS to profound pulmonary restriction/lung weakness to Hashimoto's, etc, etc.

The common ground was that all doctors said that I was profoundly ill and could not work in any job in any capacity for any amount of time. I had a 16 year rock solid full-time career before getting ill and it was clear to the SSDI doctor doing my assessment that I couldn't stand up even for a few minutes.

The tests that were abnormal were several failed spirometry and PFT tests, a treadmill test, viral titers for EBV showing IgM+ re-activation and several others, a V/Q scan, a TTT, other blood work for MCAS and episodes of anaphylaxis and more that I am not remembering off the top of my head.

After approval, I had an even better TTT that was 100% positive for POTS plus evidence of neuromuscular problems/antibodies, but I guess I will have that info for the future when my case is up for review."

 

[KitCat]

I would love it if other people would add more to this list. If anyone is reading this, and knows more about these or any other tests, please post and share.

If anything I wrote above looks incorrect or you have suggestions for improvement, please let me know

 

[halcyon]

I'm in the middle of the process now so I can't really comment. I can only go by what's in SSR 14-1p which you pasted part of above. The way I interpret it is that they acknowledge CFS exists but they won't accept the diagnosis from your doctor as enough evidence, they need some hard objective proof that you are impaired, even though no definitive test exists for CFS.

They single out HHV6 and EBV in the ruling, I don't have elevated titers for either of those. I do have elevated enterovirus titers and an abnormal autonomic testing report so I'm crossing my fingers that this will be enough to win my case. I refuse to make myself sicker by doing a CPET test just to prove that I'm sick.

 

[KitCat]

I totally support your decision on the CPET. That is what I would do as well.

I agree with you about objective evidence, but they make it a little more complicated.

In my understanding, CFS is different than a lot fro other conditions for social security. There is no official "listing" for CFS. I'm not sure how to write this and make sense. Don't get too worried about this ruling. As far as I know, it is more like a guideline for evaluating CFS cases, it's not a concrete listing to meet.

Do you know if your records have any documentation on functioning? Have you asked your doctor to fill out a functioning form or would you like a copy of one? Have you gotten a chance to look through your medical records?

To the best of my knowledge, there are two things you need to prove for cfs:

1. you have a severe impairment - this is things like: bloodwork, mris, ttt, medical tests, and/or medical records documenting symptoms over a period of time, I think you have a good sense of this one

2. this impairment keeps you from functioning - this is things like: function forms from you, function forms from your doc, medical records about functioning, function tests, and/or supporting letters about functioning, etc

Does this make any sense? You don't need to be perfect and meet every single thing in this ruling, but you do need some things from both of these two steps to be approved CFS.

 

[Clerner]

I have already done anothing SS mental exam and now they are sending me to an md doctor.

I have high titers of ebv( tested 3x) over the course of 1 year and 7 mo. To this current day I still have high early antigen and early antigen diffuse ( after initial dx 8/2014), but it is not as high as listed by SS.

Wondering if they will consider high early antigen over such a long time span?

Also have high titers for: parvovirus, coxsackie A(4 types)and B(4 types) y. Enterocolitica, mycoplasma pneumoniae, chlamydia pneumoniae, slight high hhv6, elevated hypercoagulation level.

My Dr already filled out a functional capacity form. Appt with Independent dr is June 21st and I'm really nervous!

 

[KitCat]

Hi clerner,

Good job getting a rfc form! that really helps.

If your own doc is supportive, there is a way to request that the exam be done by your own doc instead of the social security doc, let me know if you want to know more.

Here's a few tips:

The ce exam will probably be very short (like ten or fifteen minutes). they will probably ask you to do things, like pick up a penny, close your eyes and touch your nose, stand on one leg, walk across the room, etc.

If you can do everything with no problems, they will probably write down that you have no impairments or limitations.

If you have good medical records with your own doc, that is the most important. your own doc is a lot more important than what the ce writes.

Most people say to just be yourself so that the records from the ce match the records from your regular doc (like some people show up to a ce in a wheelchair and walk fine to their regular doc... don't do this)

They will write down how you get there, and whether you can drive and whether you need someone to accompany you. They may observe you in the waiting room or parking lot.

if you have a short (one page) medical source statement or a short list with an overview of your condition and medical findings, bring this with you and hand it to the social security doc. He may or may not be willing to look at it. If he does look at it, this could help. Don't hand them a big file, hand them one page. They won't spend the time to go through your medical records, they might be willing to glance at one page if it has all the important info.

That is what I did. I handed them a good one-page letter from my own doc, they read the letter and agreed with it. They didn't bother to really examine me. I used something that my doc had already written many months earlier - it wasn't specially for this appointment.

hope this helps. I understand about feeling nervous. the whole thing will be over really quick, and the ce exams often do not make a big difference for a case.

 

[Clerner]

The ce exam will probably be very short (like ten or fifteen minutes). they will probably ask you to do things, like pick up a penny, close your eyes and touch your nose, stand on one leg, walk across the room, etc

I can do all these thing, I think. That doesn't show my pain(dx with fibro) and fatigue and cognitive issues!
My dr is one who wrote the book The New Fibromyagia Remedy. He is well known for dealing with viruses, cfs/fibro bc he had it himself at one point. But, he really is an ENT dr.! Dr. Daniel Dantini.

So if I can walk across a room and pick up a penny, I can work 8 hrs a day 5x week? This is not going to be good!

 

[Clerner]

I have copies of numerous dr appt over the 1 year, 7 mo. that list fatigue, depression, fever, labored breathing/palpitations etc..( my primary Doctor, not Dr Dantini)

But how do you prove it to some dr
who has never seen you!

 

[KitCat]

sounds like you have a fabulous doctor!

most of the time social security will pay attention to your own doctor, not the CE. that is the policy.

a few options:

1. like I said, I can tell you how to try to get the appointment switched to your own doc, if you want to try. I'm not sure if there is enough time.
2. the doctor you are describing sounds like a super great help for your claim. you can just focus on getting your own doctor records as strong as possible, and ignore the ce.
3. You can get a copy of the CE report and ask your doctor to write a response.
4. You can get a function test done by another doctor to counteract what is in the CE report
5. You can wait and read the CE report and take it from there (did they give you the option to request a copy of the CE report be sent to your own doc?) It may be that it turns out just fine some people get good ce reports!
6. You can review the social security rulings on cfs and fibros with your own doc, and ask him to write you a letter or medical source statement based on how your case matches this rulings (even really really good doctors sometimes have no idea how to write for social security if you don't show them)
7. you can look at all your medical records and see what is in there, if your doc has already documented your functioning and already written something that lines up with the social security rulings, you don't need to do anything
8. if you have memory and cognitive problems, you can get your own neurocognitive testing done... if you don't like how your mental status exam turned out.
9. like I said above, a one page overview of all your medical findings could help quickly show the ce proof of your condition. If I were you I would put something like this together to bring with me. or maybe the first page of your rfc form already does this?

those are a few first thoughts

 

[KitCat]

p.s.

a few more questions. which doc filled out the rfc form? both doctors or one? the doc that filled out the form.... is this a doctor you have been seeing regularly over a period of time?

Now that I think about it, those rulings are so complex and confusing. There are two good articles on the website disability secrets that explain the two rulings. I think I would show my doc those instead.

Some people do just ignore the ce reports. sometimes they don't wind up making a difference in a case.

 

[Clerner]

My primary dr did not fill out functional capacity, the specialist dr did. I only dealt with him 2x. But, my primary docs notes about my complaints each visit--stating ebv positive and referring me to infectious disease 3x! ID would never see more!

Plus, have a big Whig rheumatologist who assessed symptoms/ordered tests and came up with dx/treatment plan, but in San Diego so he couldn't treat me.
Hope SS looks at my Sperry high inflammation level, C4a!!!!

 

[KitCat]

great job with doing all this.

social security gives the most weight to an ongoing doctor.

If you think your primary would be willing, you could show him the results from the other doctors and ask if he is willing to fill out an rfc as well.

also if you want more info on anything on the list of options I wrote above, just let me know

 

[Clerner]

If you think your primary would be willing, you could show him the results from the other doctors and ask if he is willing to fill out an rfc as

Thanks, good suggestions. My primary didn't dx me and really never knew what to do for me. He wanted Infectious Disease to take care of me but they refused. I don't even really know if he believes in cfs! He just did good notes every time that support my symptoms. That is why I had to go to a specialist Dr.on the east coast of FL.

I

 

[KitCat]

yes, if you can show him the other rfc and the results from the specialists and he is willing to fill out an rfc for you, that would be super. I find it is best to not bring more than a few pages of records with just the highlights, docs aren't willing to sift through a big file, in my experience.

I'm not sure it matters if he believes in cfs. He can help show the functional limitations, regardless of diagnosis.

social security gives the most weight to your ongoing physician.

the policy is that they are supposed to consider your ongoing physician more than the ce.

but the records from the specialists will definitely be important material. you really did the right thing by pursuing that.

you can let your doc know that social security would like a statement from your ongoing doc and ask if he'd be willing to fill out a form for you (let him know it is one form one time, some docs HATE paperwork)

Also I would suggest setting up a special appointment just for this, I wouldn't just mail him or hand him the form at the end of a visit.... if he has to do it on his own time he won't get paid. He only gets paid if he does it while you are there. You can also offer to pay for his time, if you can afford this.

 

[Clerner]

If you think your primary would be willing, you could show him the results from the other doctors and ask if he is willing to fill out an rfc as well.

I could try with him, but I don't think he will feel comfortable filling out anything for SS

Also I would suggest setting up a special appointment just for this, I wouldn't just mail him or hand him the form at the end of a visit.... if he has to do it on his own time he won't get paid. He only gets paid if he does it while you are there. You can also offer to pay for his time, if you can

My primary dr will get paid for filling out the form????

 

[KitCat]

he gets paid for having an appointment - you pay or your insurance pays. If uses the appointment to fill out the form, he is paid for his time. If you use the appointment for an exam, and then he has to fill out the form afterwards, he is not paid for his time.

you know your doc better than me.

do you know... Does he support your decision to apply for disability? Does he believe you are medically unable to work or unable to work full time? is this something you have gotten a chance to talk about with him?

If he is supportive, then it doesn't hurt to ask him if he'd be willing to take a look at one form with you. the worst that can happen is he can say no.

frankly, social security misses a lot of stuff. it's always possible that they won't realize the specialist isn't your ongoing treating physician. but just to be on the safe side, it may be worth asking your actual ongoing physician as well

when I applied, I had bounced around a lot and I don't think I had seen any one doctor very many times, so I somehow flew under the radar on that one. it definitely can happen.

 

[Billt]

Thanks for sharing all this. I am in the middle of this mess with my son as well. He can't do it on his own and I am very limited. All this seems to go over my head. Maybe we need another att as he was denied first go round and everything has just stopped. They say we need proof but there is no real test test to say YES he is sick !! So we are just in limbo.

I am so glad to hear your info. May I ask .... what is rfc report ? or ce exam ?

Thanks in advance... Billt

 

[Clerner]

I am so glad to hear your info. May I ask .... what is rfc report ? or ce exam ?

The RFC is the residual functional capacity form. A dr fills it out showing that you that your poor daily functioning won't allow you to work. I downloaded a copy from on line and gave it to my dr. I filled it out with the help of his nurse and then the dr signed.

A CE is a consulting/consultant exam done by a dr that Disability chooses. I was made to go get a mental exam by psychologist and now I'm being sent to an md who will examine me and say if I'm able to work.

Anot RFC is important to get from your dr. Hope this helps.