Applying for Social Security Disability (SSI/SSDI)

[KitCat]

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

good work!!! I'm glad you are not giving up. well done.

 

[Clerner]

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

Unfortunately, there is no place on the rfc that asks to list any tests. I don't know how to get a hold of the fatigue report. Guess I need to ask.
My doctor specialist had me fill out rfc with the help of his nurse, and he just signed. So I don't know if we filled it out correctly! Plus I only did 1 phone consult for 25 min, he Rx'd the testing I needed and I also went to see him in person. I guess I need my pcp to fill out an rfc, but I'm so tired I can't get there, plus, not sure hoe he feels.

 

[Clerner]

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

So! I did look at rfc and it asks for results. All my viruses and infections are listed. But I did not tell about low nk, hypercoagulation, or high c4a showing inflammation.

 

[Clerner]

@KitCat just got appt with lawyer for Aug 10th. They specialize in cfs and sound very knowledgeable. They said there are ways to prove pain and fatigue. I will keep you posted.

 

[KitCat]

So! I did look at rfc and it asks for results. All my viruses and infections are listed. But I did not tell about low nk, hypercoagulation, or high c4a showing inflammation.

this sounds very good. Yes, as much as possible if your doctor lists specific tests results on this form that is very helpful.

I totally understand about being too tired to get to the doctor. This is my life!!

You can only do the best you can do.

At some point, I do think getting documentation from an ongoing doctor could be very helpful to your case, if you are able -- especially if your doctor lists all these tests results on the first page.

You could probably help your doc by writing up a short list of the test results (which test you took, lab, date, and outcome)... many doctors wont' take the time to go back through all your records and find these things, but if you hand it to them on one page, they will have it in front of them. This could be very helpful.

If you make a little list like this, you can also enclose it with your reconsideration or appeal form.... I guarantee you that the social security workers also won't take the time to carefully comb through every page of your records, so if you point out to them your evidence, that will make life easier for them

You can also show your doc the rfc from your specialists, so he can see that you have already been found to have all these limitations, and let him know that social security needs some documentation from ongoing doctor.

These are just some ideas. If you can't do it right now... I totally understand. Just do what you are able to. You have a lot of time before a hearing date.

personally, I would not worry too much about the fatigue questionnaire you fill out yourself. It is unlikely this will actually help your case. If you have extra time and energy, you could look into this.

 

[KitCat]

@KitCat just got appt with lawyer for Aug 10th. They specialize in cfs and sound very knowledgeable. They said there are ways to prove pain and fatigue. I will keep you posted.

oh, great work!!!

very happy to hear this.

yes, please keep me posted. I would love to hear EVERYTHING

I have been trying to find lawyers that specialize in CFS. I know Scott Davis does but he does not work nationally (at least according to his website). If you don't mind sharing, I would love it if you would pm me the name.

 

[Clerner]

You can also show your doc the rfc from your specialists, so he can see that you have already been found to have all these limitations, and let him know that social security needs some documentation from ongoing doctor.

Great idea on making a list, and way to approach my doctor!

 

[Clerner]

@KitCat I think part of my disadvantage is my age of 45 and education- I have a Master's degree. They say I can do another job. Frustrating!

 

[Clerner]

Wonder if anyone on this forum has gotten disability being younger And with a Master's degree?

 

[KitCat]

Wonder if anyone on this forum has gotten disability being younger And with a Master's degree?

I was young. not educated though.

I have met many other young people who got on.

 

[KitCat]

Great idea on making a list, and way to approach my doctor!

super

If your doc sees what the specialist wrote, they may just repeat some of the conclusions of the specialist. I have seen doctors do that.

some docs don't like paperwork. if he is hesitant, you can let him know this is a one-time favor that can be done in one visit, and how important it is for your future. some docs get scared they will have endless paperwork or will have to go to court, which is not true.

 

[KitCat]

@KitCat I think part of my disadvantage is my age of 45 and education- I have a Master's degree. They say I can do another job. Frustrating!

most people get turned down at the beginning. it may not mean anything. some people think of this part as "step one"

 

[halcyon]

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?

I would definitely make sure to send those in to SSA if you haven't already. I doubt you absolutely need to get the stomach biopsy test done. I'm not sure how much it helped in my case.

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

The tilt table was part of it yes. They also measured autonomic response to valsalva and deep breathing, and also QSART testing.

 

[Clerner]

The tilt table was part of it yes. They also measured autonomic response to valsalva and deep breathing, and also QSART testing

Great, thanks for that testing info. I am having OI/pots symptoms again. Went to dr. today and my heart rate/pulse was sky high just from walking. It had disappeared for a while ( had it at beginning of illness) and now seems to be back!
I did already give all my coxsackievirus results but was denied.

 

[Clerner]

They also measured autonomic response to valsalva and deep breathing, and also QSART testing.

What type of dr does this Qsart testing?

 

[halcyon]

What type of dr does this Qsart testing?

A neurologist that specializes in autonomic disorders is who did mine.

 

[taniaaust1]

So! I did look at rfc and it asks for results. All my viruses and infections are listed. But I did not tell about low nk, hypercoagulation, or high c4a showing inflammation.

seeing the viruses and infections were listed, I personally dont think these other things would of helped much more anyway if they had been listed.

Something like a tilt table test results may be more useful as that could show you have problems just with being upright eg in my case my dystolic BP can ditch to 20 or 40 and my systolic can go up as high as nearly 200 in a minute of standing.

 

[taniaaust1]

@KitCat I think part of my disadvantage is my age of 45 and education- I have a Master's degree. They say I can do another job. Frustrating!

You are my age and yes I think age made it so much harder and still does as far as getting what I need and cause I seem bright, that always makes it worst too.

No matter what part of the world you are in thou, nearly everyone though gets turned down first time for disability with this illness. Its best kind of expect to be turned down once.

 

[KitCat]

seeing the viruses and infections were listed, I personally dont think these other things would of helped much more anyway if they had been listed.

Something like a tilt table test results may be more useful as that could show you have problems just with being upright eg in my case my dystolic BP can ditch to 20 or 40 and my systolic can go up as high as nearly 200 in a minute of standing.

yes good point about tilt table test!

If you can't afford or access the tilt table test you can simply have your doc measure your blood pressure lying down and standing and write in your records about how standing causes dizziness or difficulties. "poor man's tilt table" I read about this here.

https://www.masscfids.org/disabilit...ity-disability-claimsreviews?showall=&start=3

"A proportion of CFS patients have neurally-mediated hypotension. Tilt-table tests are expensive and may not be reimbursable. Patients seeking the test would have to receive the test from a physician following protocols known to be diagnostic for CFS patients. A tilt-table test performed by a tester unfamiliar with CFS may or may not be of value.

The Ruling appears to allow for an alternative test (“or other clinically accepted form of testing”) which might include the "poor man's tilt-table": the taking of blood pressure sequentially—lying down, then immediately after standing, and then 3 minutes later, standing again. Such a test performed by a CFS-informed physician could be of value if a standard tilt-table test is not available."

Again, the blood pressure alone will be meaningless unless your doctor writes that it is causing you problems standing or functioning.

 

[taniaaust1]

Again, the blood pressure alone will be meaningless unless your doctor writes that it is causing you problems standing or functioning.

If someone is getting blood pressure of over 160 from standing, even if it isnt giving them actual symptoms (I dont get dizzy till my BP gets over 160-165), its still a danger so should be considered that standing is an issue to that person.