What should I expect at the disability doctor appointment?

[Gingergrrl]

I was just being humorous. Nothing negative was meant towards you. I completely understand that you need your wheel chair. Now my view of lawyers ... that is another story.

It's all good and I appreciate you saying that. The wheelchair and now the motorized wheelchair has been lifesaving for me but I still hate the fact that I require them and hate the fact that I am on SSDI so I may be a little sensitive to the issue. I also lucked out with my attorney and know that is not the case for everyone. Best wishes to you and the original poster and no hard feelings.

 

[Snow Leopard]

If one wants to file under ME/CFIDS and proceed to put their head in a political vice grip, well, good luck to them

Unless your disability is primarily caused by depression, it is dishonest and potentially fraudulent to claim that it is due to depression.

I don't recommend claiming under depression, unless your disability is primarily caused by depression and not ME!

 

[Valentijn]

There is NO OFFICIAL TEST that has been approved by the government that can distinguish between the two conditions.

There is NO OFFICIAL TEST that can objectively diagnose ME/CFIDS. It is for practical purposes SUBJECTIVE when all is said and done when it is put under the criteria of disability review.

It is untrue to claim that there is no objective test to show physical disability, versus a mood disorder.

A single-day CPET can be used to show disability. It's the gold standard in objective testing which shows cardiac or pulmonary dysfunction. It cannot be faked, and it has been used for 50+ years. Mildly reduced scores can be due to deconditioning, but worse scores cannot be attributed to deconditioning.

In your OWN mind it may be perceived as false but not to me, the psychiatrist doing the diagnosis, the disability reviewer or likely other people.

If one goes to a psychiatrist and one convinces them that one has cognitive dysfunction (which is real) and fatigue (which is real), they will diagnose that person with depression.

Cognitive dysfunction and fatigue are not sufficient to diagnose depression. Anyone doing so, in the absences of an actual alteration in mood (it is a mood disorder after all), is a quack. And it's a lie to claim that you experience depression based solely on those two symptoms.

Now my view of lawyers ... that is another story.

Most lawyers are normal, decent people, just like everyone else. Please save your slurs for forums where blind hatred is the norm. This forum is a community for people with a disease, and I'd prefer not seeing my entire profession attacked.

 

[Undisclosed]

My advice to people with ME/CFIDS is to use depression as the reason for disabilty. It is something they understand and depression (cognitive dysfunction and fatigue) symptoms are encompassed by ME/CFIDS. Also be aware that for political reasons, they rather approve you for that than ME/CFIDS.

This is bad advice because it constitutes fraud if you aren't depressed.

Often people with chronic illnesses have accompanying depression which further impedes ability to function.

There are no specific mental health symptoms eg cognitive dysfunction that guarantee disability approval. What is the focus of disability assessments is functional capacity to work rather than specific impairments or diagnoses.

No one is disabled simply because of a diagnosis. It is the severity of your symptoms and limitations and how they impact on your life. For example, in high school I had a friend who was in a wheelchair due to a birth defect, she could walk short distances with the aid of crutches. She is gainfully employed at radio station full-time. Then there are people with ME who have such severe symptoms and physical limitations that the use of a wheelchair is necessary despite the fact that there is nothing physically wrong with their legs.

They will likely ask you questions about your activities of daily living re: what are you physically still able to do in the home, at work etc. Success of getting disability = the inability to work at any job for any length of time. If a doctor writes that you can work part-time, that will not get you disability, they have to state you can't work at all and that your illness is not going to resolve any time soon.

You should probably prepare yourself by going through your worst day and thinking about your limitations, eg:

How long can you sit up for?
How long can you stand for?
When do you 'crash'?
Are you able to read, comprehend what you are reading?
Does pain impair your functioning?
How much sleep do you get, is it unrefreshing, does it contribute to cognitive function?
What household chores can you do if any?
Are you able to bathe/shower independently?
Are you able to shop?
Do you have difficulty talking on the phone, carrying on conversations?
What kind of help are you presently receiving for things you used to be able to do yourself?
Can you still drive?
How do you cope in a noisy environment?

Hopefully, you have medical records that will support your claims.

 

[prioris]

This is bad advice because it constitutes fraud if you aren't depressed.

Hopefully, you have medical records that will support your claims.

I completely agree. None of my posts above contradict this.

If someone with ME/CFIDS who also has FMS goes on disability due to FMS, that is not fraud.

There are many secondary medical conditions one can go out on disability with this disease.

Without supportive medical records, you can't go thru the claim process

Many people with this disease will commit suicide or end up living in the streets because someone gave them bad advice and told them to take the ME/CFIDS path to disability and not to mention other options.

 

[CFS_for_19_years]

I don't recall being asked what diseases/diagnoses I had at any in-person disability review.

The doctor doing the review isn't the one who decides your case. The case reviewers, whom you will never meet, will look at the diseases/diagnoses that are in your medical record, they will read your application where hopefully you have done a good job of describing how your disability affects you, then they will read the examiner's notes.

I recall the questions I was asked at the disability review by the examiner were ones that could be answered with short answers, so don't get the impression that you need to speak in paragraphs. The questions were:

Who does the grocery shopping?
Who does the housework?
How did you get here today?

 

[Gingergrrl]

The doctor doing the review isn't the one who decides your case.

Exactly and in my case, my atty told me not to bring any medical records or paperwork to the disability doctor b/c they were doing an independent assessment and did not need to see it.

They were interested in my level of functioning and did a general physical exam and basic neuro exam. They had me stand without touching a wall for as long as I could but this is near impossible for me b/c of my breathing but I tried my hardest to do it.

My mom pushed my wheelchair into the room and was about to leave and the doctor asked her to stay in the room so she did. She didn't speak unless the doctor asked her a direct question and confirmed that I cannot do any basic physical tasks on my own (cannot drive, walk, shop or prepare food, do laundry, lift or carry things, etc) but cognitively I am okay and can balance my checkbook/manage my money, arrange my own doctor appts, use computer, etc.) We were completely honest re: what I could and could not do.

The doctor was very nice (I lucked out, I know this is not always the case) and told me to make sure I provided all necessary documentation to SSDI which I had. My doctors all documented that I was severely ill and could not work in any job in any capacity for any length of time. The disability doctor did not see these letters or any medical records so he was just an additional opinion assessing my functioning (or that was my take on it at least.)

 

[prioris]

who does your house work ... that's funny. most people with the disease end up with messy houses. disability reviewer should just visit their homes.

it took decades for me to figure out how to keep a house clean with minimal energy. i never do any housework beyond 20 minutes a day. any mess i make stays within 18 square inches. i do little by little. i never collect things either. if one thing comes in the house then another item goes out. i'm more an anti hoarder although my supplement collection keeps growing. the day i die, i want to have all my possessions in a shoe box.

 

[CFS_for_19_years]

who does your house work ... that's funny. most people with the disease end up with messy houses. disability reviewer should just visit their homes.

My answer to that question would be "no one."

Next question....

 

[SickOfSickness]

My answer to that question would be "no one."

Next question....

Healthy people have no idea!

 

[sickntired771]

This is bad advice because it constitutes fraud if you aren't depressed.

Often people with chronic illnesses have accompanying depression which further impedes ability to function.

There are no specific mental health symptoms eg cognitive dysfunction that guarantee disability approval. What is the focus of disability assessments is functional capacity to work rather than specific impairments or diagnoses.

No one is disabled simply because of a diagnosis. It is the severity of your symptoms and limitations and how they impact on your life. For example, in high school I had a friend who was in a wheelchair due to a birth defect, she could walk short distances with the aid of crutches. She is gainfully employed at radio station full-time. Then there are people with ME who have such severe symptoms and physical limitations that the use of a wheelchair is necessary despite the fact that there is nothing physically wrong with their legs.

They will likely ask you questions about your activities of daily living re: what are you physically still able to do in the home, at work etc. Success of getting disability = the inability to work at any job for any length of time. If a doctor writes that you can work part-time, that will not get you disability, they have to state you can't work at all and that your illness is not going to resolve any time soon.

You should probably prepare yourself by going through your worst day and thinking about your limitations, eg:

How long can you sit up for?
How long can you stand for?
When do you 'crash'?
Are you able to read, comprehend what you are reading?
Does pain impair your functioning?
How much sleep do you get, is it unrefreshing, does it contribute to cognitive function?
What household chores can you do if any?
Are you able to bathe/shower independently?
Are you able to shop?
Do you have difficulty talking on the phone, carrying on conversations?
What kind of help are you presently receiving for things you used to be able to do yourself?
Can you still drive?
How do you cope in a noisy environment?

Hopefully, you have medical records that will support your claims.

Thank you Kina this is really helpful to mentally prepare for this. It's crazy because I am honest and really suffering but I am going in there feeling like I am "guilty" because my condition is invisible and I don't think people have any idea of what hell i go through.

Is a family member allowed to sit in the appointment with me? I hope they won't make them leave.

 

[prioris]

I am going in there feeling like I am "guilty" because my condition is invisible and I don't think people have any idea of what hell i go through.

The powers that be that control and oversee those agencies fully know you are going thru hell. The process is by design. Since it is subjective, you are at their mercy. Just know you have other options and you will feel more relaxed. The decision they make is not the be all or end all for pursuit of disability. Be persistent.

 

[Undisclosed]

Thank you Kina this is really helpful to mentally prepare for this. It's crazy because I am honest and really suffering but I am going in there feeling like I am "guilty" because my condition is invisible and I don't think people have any idea of what hell i go through.

Is a family member allowed to sit in the appointment with me? I hope they won't make them leave.

I don't see why you wouldn't be able to have a family member there. I have taken family members to appointments in the past just so they can act as my second brain related to cognitive function -- I sometimes forget important things very easily.

 

[Jennifer J]

Hi, @sickntired771.

I'm not sure if you can get the nolo book from the library. If it's still the case, they are lawyers in Berkeley, that put together various legal books. I have found them very helpful.

http://www.nolo.com/products/nolos-guide-to-social-security-disability-qss.html

Also, when I was fighting for mine I found disinissues very helpful, too. I'm not sure how they are now. This was over 8 years ago that I had to fight for it.

http://www.cfids-me.org/disinissues/

https://groups.yahoo.com/neo/groups/Disinissues/info

I've been through a few medical exams for SSDI. It's good that you are asking questions and want to understand and be prepared.

I'm wishing you the best.

 

[Amaya2014]

I'm going through the process now. 2 denials and waiting on hearing. I obtained the SSA records and it's clear they aren't taking CFS into consideration, despite this being primary reason I can't work.

I'm curious whether those who were awarded SSDI were granted for CFS or was it for other reasons? SSA is pretty clear on their determination..,would you kindly let me know if CFS was the actual condition listed in your letter/decision? Thank you.

 

[prioris]

Here is an excerpt from nolo

The Social Security Administration (SSA) is generally skeptical of disability claims based solely on chronic fatigue syndrome (CFS). Claims are rarely approved at the initial or reconsideration levels, and even at the hearing level, most Administrative Law Judges (ALJs) are reluctant to pay benefits except in the most compelling cases.

http://www.nolo.com/legal-encyclopedia/getting-disability-benefits-chronic-fatigue-syndrome.html

Kind of shocking and saddening to still see that nothing much has changed.

The only ace in the hole for CFS disability approval may be if the person is fortunate to get sick with Epstein Barr Virus as trigger.

 

[CFS_for_19_years]

Here is an excerpt from nolo

The Social Security Administration (SSA) is generally skeptical of disability claims based solely on chronic fatigue syndrome (CFS). Claims are rarely approved at the initial or reconsideration levels, and even at the hearing level, most Administrative Law Judges (ALJs) are reluctant to pay benefits except in the most compelling cases.

http://www.nolo.com/legal-encyclopedia/getting-disability-benefits-chronic-fatigue-syndrome.html

Kind of shocking and saddening to still see that nothing much has changed.

The only ace in the hole for CFS disability approval may be if the person is fortunate to get sick with Epstein Barr Virus as trigger.

The same article you quoted states that there are "medically determinable impairments" that can assist the case, such as:

What's a Medically Determinable Impairment?

One or more of the following medical signs, clinically documented for no less than six consecutive months, will generally be considered evidence that CFS is a medically determinable impairment:

• tender or swollen lymph nodes on exam
• nonexudative pharyngitis (a dry sore throat)
• chronic and reproducible muscle tenderness over multiple exams, with positive tender points
• positive mental status exam findings, and/or
• any other indicators of CFS that are medically accepted and consistent with the evidence in your case.

Although the ruling notes the absence of any definitive lab testing for CFS, it provides that any of the following laboratory findings will establish the presence of a MDI:

• elevated antibody titers to Epstein-Barr virus
• abnormal MRI brain scan
• tilt table testing showing neurally mediated hypotension, and/or
• results of psychological testing

I agree though that it is often difficult to get SSDI benefits on the first application, and that many have to have a hearing in order to receive benefits. When I was in a support group in the early 1990's, patients would report to one another how their hearing went.

 

[prioris]

it says that but it usually has to be attached to epstein barr virus. only a small percentage of cases have that.

maybe she could go to a support group to research for ideas on what to do.

one warning on support groups: if they are inhabited by a clique then they are not a real support so be on guard. the clique problem is a major problem with support groups.

 

[Gingergrrl]

The only ace in the hole for CFS disability approval may be if the person is fortunate to get sick with Epstein Barr Virus as trigger.

I was so ill from Epstein-Barr that I was almost hospitalized twice, first from liver tests off the charts/near jaundice and then three weeks straight of a high fever and an abscess on my tonsil that almost choked off my air supply.

First you were "joking" about being lucky to have a wheelchair and now being "fortunate" to have had Epstein Barr and mono. I am pretty patient and trying to give you the benefit of the doubt that you are joking around but am just not finding this stuff funny.

EBV and a subsequent virus ended my 16 year career and life as I knew it. I cannot walk more than about 5-10 feet without a wheelchair and even this is pushing my lung capacity. I really doubt you would trade places with me if given the chance. There is nothing fortunate about my situation if you knew me and my life is pathetic now.

 

[prioris]

You misunderstood. For disability application it works in your favor. Without it, your disability case could have been doomed if something else triggered it.

Taking one thing out of context and blowing up. You could have asked for clarification. This is why trying to help people can come under murphy's law of no good deed goes unpunished. Helping people can back fire but I do it despite the danger..