Applying for Social Security Disability (SSI/SSDI)

[KitCat]

I looked up some of these tests and I am totally bewildered! I feel like there must have been something more in your doctor's records. Did you have a supportive doctor who was knowledgeable about Social Security?

 

[taniaaust1]

Back when I was dealing with SSDI they would release the physical exam records, but they would NOT release the mental exam records to me. Sounds like they are releasing all records now. Is that correct?

Im not surprised to read this at all. With holding parts of reports etc seems to be common when one has ME/CFS as many deem it a mental health issue and places whether its assessments or other things.. can often get away with not having to give out things they wrote about you if they deem it "not in your own best interest' (protecting your mental health) to know as far as the mental health issue goes and so many does see our issue as some kind of mental health problem.

I'd say your dr has given them info (or whoever assessements) on the grounds it wasnt to be later given to you.

Here in australia even with using our freedom of info act, I know its a different thing but I wasnt even able to get a copy of my support contract as they put it as "confidential" onto it so my support agency wasnt able to give me a copy of the contact even when I applied for it officially under the FOI act

This makes it so I cant even correct wrong things being said in it about me and my health etc (and then I find out after a year or so that its been changed a bit as something on it was found to be wrong (of cause they didnt share with me still what the wrong version of it was ..they only wont tell me they just had to correct it ) but I still havent seen it! it could be full of other wrong stuff. I suspect it is.

anyway, if deemed "not in your best interest" parts of things may be discluded when asking for copies of things. (Im sure other places work under similar rules with all this where they will withhold info if they think it is detemential to your mental health).

In my case this has even gone further at times then just withholding mental health stuff said from me but also as far as not even given me physical reports of test results which found actual problems due to the person I was dealing with, which I assume was cause that one didnt want to worry me.

This withholding mental health reports back cause of being so called maybe mentally disturbing to the person, I personally feel is just an excuse to cover up things sometimes said about us and cover up things they may have got wrong about our ME/CFS as most of the ones doing these assessements or making approval decsions dont seem to have much of a clue.

anyway, this kind of thing from what Ive experienced commonly happens where we cant get the info most others would get.. (and what makes it worst is sometimes people often dont realise they have stuff from their files purposely missing from your eyes, when they ask for a copy and get them sent.

You may think you have everything sent to you from an assessment and what it was based upon, but you may not, if they think something is going to stir you up which they dont want you to see, they often wont even say its removed. This can leave a person completely confused why they got knocked back for whatever they were applying for.

 

[KitCat]

Here in australia even with using our freedom of info act, I know its a different thing but I wasnt even able to get a copy of my support contract as they put it as "confidential" onto it so my support agency wasnt able to give me a copy of the contact even when I applied for it officially under the FOI act This makes it so I cant even correct wrong things being said in it about me and my health etc (and then I find out after a year or so that its been changed a bit as something on it was found to be wrong (of cause they didnt share with me still what the wrong version of it was ) but I still havent seen it! it could be full of other wrong stuff..

I am just so sad for everything you have been going through. It is just criminal that they would withhold your support contract from you. I can't believe that.

 

[KitCat]

@halcyon I'm really happy for you for getting on so quickly. i would definitely like to share that testing info with others.

here is a list of Everything No One ever told me when I got on disability. Congrats on your approval.

 

[halcyon]

What kind of doctors gave you these tests? Did you have to go to special labs or facilities? Were these tests covered by insurance?

The stomach biopsy test is from Dr. Chia's lab. The serology tests are from ARUP labs which most US hospital labs should have access to, as well as LabCorp with the right test codes. The autonomic testing was from Stanford neurodiagnostics lab. I received most of the test orders from Dr. Chia and Stanford CFS clinic. Everything was covered by insurance except the stomach biopsy test.

I am also curious what fatigue questionnaire you filled out. Do you mean the "adult function report" sent by social security? or was this something different?

I don't see any official designation on the form, it's literally just called "fatigue questionnare" and it has 8 questions.

Did you ask your doctor to fill out function forms or write a letter for you or do anything else special?

No, I never spoke with any of my doctors about my case. They may have filled something out on my behalf but I have no idea.

Did you you list CFS as your disability condition? In your award letter, did it say what condition you were approved for?

Yes CFS was what I applied under. I haven't received the award letter yet, just the check and a notice from my lawyer that I was approved.

 

[taniaaust1]

I am just so sad for everything you have been going through. It is just criminal that they would withhold your support contract from you. I can't believe that.

I was truely horrified too and even more so when I couldnt even get it under the offical channels. This block is from the very ones (the state disability service) I have already all the issues with. They dont want me to get the stuff they wrote about me to my support agency (so I dont have a clue what they are saying to them) and this was even before my court case against them.

(there may be stuff in there which actually support my court case so its something I should talk to my lawyer about).

The other who didnt pass on info to me so left me without knowing my blood tests had twice showed severe hypoglycemia was a dr who lied to me and told me all my blood tests had come back fine.

I say again to everyone reading this thread, if you are applying anywhere to anything, try to make sure you know what is in your files.

 

[halcyon]

I feel like there must have been something more in your doctor's records. Did you have a supportive doctor who was knowledgeable about Social Security?

It's possible. I listed two GPs and two CFS specialists (among others). I don't know if any of them are knowledgeable about SSDI. I just assumed they would reach out to me when SSA contacted them but I never heard anything.

 

[taniaaust1]

Yes CFS was what I applied under. I haven't received the award letter yet, just the check and a notice from my lawyer that I was approved.

congrats

 

[KitCat]

The stomach biopsy test is from Dr. Chia's lab. The serology tests are from ARUP labs which most US hospital labs should have access to, as well as LabCorp with the right test codes. The autonomic testing was from Stanford neurodiagnostics lab. I received most of the test orders from Dr. Chia and Stanford CFS clinic. Everything was covered by insurance except the stomach biopsy test.

I don't see any official designation on the form, it's literally just called "fatigue questionnare" and it has 8 questions.

No, I never spoke with any of my doctors about my case. They may have filled something out on my behalf but I have no idea.

Yes CFS was what I applied under. I haven't received the award letter yet, just the check and a notice from my lawyer that I was approved.

thanks for your response!

This is REALLY helpful info. Thanks so much for sharing.

Your case is really intriguing to me

I looked up fatigue questionnaire -- I had not heard of this before. It appears to be pretty uncommon / not used in most areas. Thanks for letting me know about it.

It is great that your case went so easily for you. You were super smart to get all of those tests.

I am wondering if maybe your lawyers sent your doctors some more forms to fill out -- or your doctor already knew how to create documentation for disability (which is rare).

It would be against social security to approve you without medical documentation on your functioning -- so either they broke their own policy or somehow that must have been documented... but if you haven't read your medical records, then I guess we may never know how or where that happened

This is pretty much the best CFS disability story I have ever heard!!!

 

[KitCat]

I was truely horrified too and even more so when I couldnt even get it under the offical channels. This block is from the very ones (the state disability service) I have already all the issues with. They dont want me to get the stuff they wrote about me to my support agency (so I dont have a clue what they are saying to them) and this was even before my court case against them.

(there may be stuff in there which actually support my court case so its something I should talk to my lawyer about).

The other who didnt pass on info to me so left me without knowing my blood tests had twice showed severe hypoglycemia was a dr who lied to me and told me all my blood tests had come back fine.

I say again to everyone reading this thread, if you are applying anywhere to anything, try to make sure you know what is in your files.

I totally agree. And you are doing everything right. I have to believe this is going to work out in the end. I really admire you for continuing to persist.

 

[halcyon]

It would be against social security to approve you without medical documentation on your functioning -- so either they broke their own policy or somehow that must have been documented... but if you haven't read your medical records, then I guess we may never know how or where that happened

I'm guessing the autonomic testing played a large part since it's objective proof that something is wrong but I have no idea.

 

[KitCat]

I'm guessing the autonomic testing played a large part since it's objective proof that something is wrong but I have no idea.

Thank you. I will look up more about this. I would like to learn more.

Did you see the test results from this test? I am really curious if they included any information on functioning.... like did they say how long you could sit or stand or walk or discuss the limitations you had with daily life activities?

 

[halcyon]

Did you see the test results from this test? I am really curious if they included any information on functioning.... like did they say how long you could sit or stand or walk or discuss the limitations you had with daily life activities?

Yes I have the results. No it doesn't talk about functioning, but when your heart rate goes up to 150 just being upright they can hopefully infer that you won't function too well like that. The fatigue questionnaire did have questions along those lines.

 

[Clerner]

I was just approved on the first attempt. I sent in stomach biopsy enterovirus test results,

Congrats! I have 4 extremely high high strains of Coxsackie A (1:1600) and 5 high strains of Coxsackie B from blood tests. Do I need to do a stomach biopsy? Maybe I need to do some more testing. I have 17 pages of blood tests showing about 5 viruses and 5 bacterial infections, but it doesn't seem to be enough. I wonder what test I could do that might not be so invasive, as I am not a needles person. Plus, I have the blood hypercoagulation showing high, high c4a inflammation, plus low nk cells.

 

[Clerner]

Yes I have the results. No it doesn't talk about functioning, but when your heart rate goes up to 150 just being upright

Is this the tilt table test? Is it the same as autonomic testing?

 

[Billt]

Congratrs halcyon !!! I am sure this will help you. WE are still in the process !!!

 

[Clerner]

I looked up fatigue questionnaire

I never got a fatigue report either. And that is what I struggle with the most! Guess I'll be getting a lawyer.

 

[Clerner]

WE are still in the process !!!

Pleasant keep us posted! I am about to send in my reconsideration appeal after my denial.

 

[KitCat]

Congrats! I have 4 extremely high high strains of Coxsackie A (1:1600) and 5 high strains of Coxsackie B from blood tests. Do I need to do a stomach biopsy? Maybe I need to do some more testing. I have 17 pages of blood tests showing about 5 viruses and 5 bacterial infections, but it doesn't seem to be enough. I wonder what test I could do that might not be so invasive, as I am not a nendless person.

@Clerner
It is so rare to get on initial application. I think what you are doing is working... it just takes time

When your doctor filled out the rfc form, did they list all of these tests as evidence?

There is usually a question on the first page of the rfc form that asks you to list clinical evidence. What did your doc write there?

It sounds like you have some excellent lab results. That's great!!!

It seems to me that looking into a tilt table test might be helpful if available in your area. I am not sure more tests for infections or bacteria will make any difference, since you already have shown that.

Social security will be very happy if they see that your doctor used your test results as a basis to form a medical opinion that you can't function and can't work.

My understanding is this:

From Social Security viewpoint, showing lab tests for 5 infections or 10 infections or 20 infections won't be significantly different. What will be significantly different is if your medical records show that these infections keep you from being able to work.

 

[KitCat]

I never got a fatigue report either. And that is what I struggle with the most! Guess I'll be getting a lawyer.

It does not hurt to fill this out. But what will really matter is what your doctor writes.