Re: testing advice

[Guest guest]

On Sep 24, 2006, at 10:01 PM, marti_zavala wrote:

> Hello all,

> Requesting advice/opinions on the tests that I should have done to

> document my illness for disability purposes. I have insurance but it

> is very restrictive so it will have to be out of pocket. For that

> reason, I am trying to discover the most indicative tests.

>

> Does anyone have experience with the tests that mean something to SSI?

>

> My thoughts: the tilt table test showing orthostatic intolerance...

> Really brain-fogged and not sure how to prove my illness/disability.

You need to work closely with a doctor who can do this. It's a tricky

business, especially if you're working toward a CFS diagnosis.

You might try getting an ME diagnosis instead. It's a lot better

defined, and IIRC a few people here have had a much easier time

getting disability for it than for CFS.

Sara

[Guest guest]

Marti,

You must go to the list that knows about CFS/Disability.

disinsissues

Hope I go that right.

From the documents in their files, or from a search, or person here, find the SS

definition/perimeters of CFS category that meets the requirement for being

disabled.

They may be at CAA, NCF, or other websites.

But if that group is still there, THEY know the most about current best

guidelines for qualifying.

Did you see my message about this before?

The tilt table test can be traumatic and I don't know if it is needed for this,

so find out for sure.

Katrina

>

> Hello all,

> Requesting advice/opinions on the tests that I should have done to

> document my illness for disability purposes. I have insurance but it

> is very restrictive so it will have to be out of pocket. For that

> reason, I am trying to discover the most indicative tests.

>

> Does anyone have experience with the tests that mean something to SSI?

>

> My thoughts: the tilt table test showing orthostatic intolerance...

> Really brain-fogged and not sure how to prove my illness/disability.

>

> Thank you,

> Marti Z.

>

[Guest guest]

You could try to find a helpful and skilled neurologist

whom could give you a diagnosis of dysautonomia.

Which means dysfunction of the autonomic nervous system and is common

in many types of CFS.

Per

> Hello all,

> Requesting advice/opinions on the tests that I should have done to

> document my illness for disability purposes. I have insurance but it

> is very restrictive so it will have to be out of pocket. For that

> reason, I am trying to discover the most indicative tests.

>

> Does anyone have experience with the tests that mean something to SSI?

>

> My thoughts: the tilt table test showing orthostatic intolerance...

> Really brain-fogged and not sure how to prove my illness/disability.

>

> Thank you,

> Marti Z.

>

[Guest guest]

I got SSI without anything but psycholigical testing- but I got it for clinical

depression. Same amt of money each month as if I had been given the correct

diagnosis. And any medical records from that time are gone- and my more recent

records say CFS. and most lately my cooperative doc changed it to M.E. when I

was able to tell him the code.

Adrienne

testing advice

Hello all,

Requesting advice/opinions on the tests that I should have done to

document my illness for disability purposes. I have insurance but it

is very restrictive so it will have to be out of pocket. For that

reason, I am trying to discover the most indicative tests.

Does anyone have experience with the tests that mean something to SSI?

My thoughts: the tilt table test showing orthostatic intolerance...

Really brain-fogged and not sure how to prove my illness/disability.

Thank you,

Marti Z.

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Kat is 100% correct. The only thing I can add is the below that

I received backchannel from a fellow sufferer in Canada. What Nat

is referring to is blood tests that can be done in the U.S. as well.

I was thinking that for those of us facing disability, maybe just

apply for the National Guard or the Army. They would kick us out in

two days for medical reasons, assuming we could even make it the

first day.

Mike C

<<Mike, yeah up here in Canada CD4, CD8 abnormalities are

definately helpful for disability disputes.

It's pretty much all I've got to show something is wrong

Nat

In , " kattemayo " <kattemayo@...>

wrote:

> Marti,

>

> You must go to the list that knows about CFS/Disability.

>

> disinsissues

>

> Hope I go that right.

>

> From the documents in their files, or from a search, or person

here, find the SS definition/perimeters of CFS category that meets

the requirement for being disabled.

> They may be at CAA, NCF, or other websites.

>

> But if that group is still there, THEY know the most about

current best guidelines for qualifying.

>

> Did you see my message about this before?

>

> The tilt table test can be traumatic and I don't know if it is

needed for this, so find out for sure.

>

>

> Katrina

[Guest guest]

Adrienne, as we all know, private disabiliy companies limit mental

illness payments to two years. Are you saying that SSI has no time

limit on depression/mental illness as the cause of disability?

Mike C

In , " Adrienne G. " <duckblossm@...>

wrote:

>

> I got SSI without anything but psycholigical testing- but I got it

for clinical depression. Same amt of money each month as if I had been

given the correct diagnosis. And any medical records from that time

are gone- and my more recent records say CFS. and most lately my

cooperative doc changed it to M.E. when I was able to tell him the

code.

> Adrienne

[Guest guest]

Katrina, Mike & Others,

Thank you for your help. I have joined disinsissues. Can't search

old posts. Found their links page very helpful. Still searching and

learning. They have been helpful but no real info yet on tests I can

take to my current, non-CFIDS doctor.

I know this group has had much experience in this arena and most are

too ill to belong to other groups. My post was kind of wondering if

the latest advancements have translated to better/easier proving of

disability or illness. I know the genetic stuff is too new but I was

wondering if there were other tests from the years I was away

(struggling NOT to be disabled).

I did actually find the SS Disability definition of CFIDS.

> > They may be at CAA, NCF, or other websites.

Can you tell me what CAA is? I found NCF. Masschusetts CFIDS

webpage had a lot of very useful information.

Mike, I am considering Dr. Larry Sharp in Fort Worth. He seems to

follow Dr. Cheney's research. If you have an opinion, would you be

so kind as to back-channel me? Dr. Salvato in Houston is presenting

at the Houston CFIDS group on 11/14. I am planning on going to see

where she stands with the newest developments. Trying to find a Dr.

that can run some tests so I have medical documentation AND maybe

some relief!

Thanks again,

Marti Z.

Houston

>

> > Marti,

> >

> > You must go to the list that knows about CFS/Disability.

> >

> > disinsissues

> >

> > Hope I go that right.

> >

> > From the documents in their files, or from a search, or person

> here, find the SS definition/perimeters of CFS category that meets

> the requirement for being disabled.

> > They may be at CAA, NCF, or other websites.

> >

> > But if that group is still there, THEY know the most about

> current best guidelines for qualifying.

> >

> > Did you see my message about this before?

> >

> > The tilt table test can be traumatic and I don't know if it is

> needed for this, so find out for sure.

> >

> >

> > Katrina

>

[Guest guest]

If you go hear Salvato, could you please post here about it? Thanks,

Adrienne

Re: testing advice

Katrina, Mike & Others,

Thank you for your help. I have joined disinsissues. Can't search

old posts. Found their links page very helpful. Still searching and

learning. They have been helpful but no real info yet on tests I can

take to my current, non-CFIDS doctor.

I know this group has had much experience in this arena and most are

too ill to belong to other groups. My post was kind of wondering if

the latest advancements have translated to better/easier proving of

disability or illness. I know the genetic stuff is too new but I was

wondering if there were other tests from the years I was away

(struggling NOT to be disabled).

I did actually find the SS Disability definition of CFIDS.

> > They may be at CAA, NCF, or other websites.

Can you tell me what CAA is? I found NCF. Masschusetts CFIDS

webpage had a lot of very useful information.

Mike, I am considering Dr. Larry Sharp in Fort Worth. He seems to

follow Dr. Cheney's research. If you have an opinion, would you be

so kind as to back-channel me? Dr. Salvato in Houston is presenting

at the Houston CFIDS group on 11/14. I am planning on going to see

where she stands with the newest developments. Trying to find a Dr.

that can run some tests so I have medical documentation AND maybe

some relief!

Thanks again,

Marti Z.

Houston

>

> > Marti,

> >

> > You must go to the list that knows about CFS/Disability.

> >

> > disinsissues

> >

> > Hope I go that right.

> >

> > From the documents in their files, or from a search, or person

> here, find the SS definition/perimeters of CFS category that meets

> the requirement for being disabled.

> > They may be at CAA, NCF, or other websites.

> >

> > But if that group is still there, THEY know the most about

> current best guidelines for qualifying.

> >

> > Did you see my message about this before?

> >

> > The tilt table test can be traumatic and I don't know if it is

> needed for this, so find out for sure.

> >

> >

> > Katrina

>

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Adrienne,

I would be happy to post whatever I can - I will be

taking my 17 year old son and I will have him take

notes as well (good practice for college).

Also, I have received a couple of excellent emails

recently from users in disinsissues regarding testing

CFIDS/ME. Of course, I must ask the authors for

permission to share and I would prefer to share

backchannel as I don't want to get in trouble with

either list. I felt the information was useful and I

would be happy to share.

Blessings,

Marti Z.

__________________________________________________

[Guest guest]

Marti-I posted to you on this thread about the CD8/CD4 abnormalities.

That was what Dr. Salvato was in to when I saw her, along w/ other

blood test abnormalities. I have a letter from her to my PCP

indicating that my blood tests were what was usually found in CFS

patients.

If you go to Dr. Sharpe and he is piggy-backing off of Cheney (maybe

that is why Cheney spoke in Ft. Worth so he could meet w/ Sharpe),

from what I know the new Cheney stuff won't help you all that much

with disability. Now, if you went to see Cheney in NC, that is a

different story.

Since you live in/near Houston, I would suggest to try Salvato first.

FWIW, she also ran b-cell tests and maybe now she has other tests

that show how CFS patients are different from controls. I would

definitely go see her if I were considering appplying for disability.

Mike C

> Katrina, Mike & Others,

> Thank you for your help. I have joined disinsissues. Can't

search

> old posts. Found their links page very helpful. Still

searching and

> learning. They have been helpful but no real info yet on tests

I can

> take to my current, non-CFIDS doctor.

>

> I know this group has had much experience in this arena and most

are

> too ill to belong to other groups. My post was kind of

wondering if

> the latest advancements have translated to better/easier proving

of

> disability or illness. I know the genetic stuff is too new but

I was

> wondering if there were other tests from the years I was away

> (struggling NOT to be disabled).

>

> I did actually find the SS Disability definition of CFIDS.

>

> > > They may be at CAA, NCF, or other websites.

> Can you tell me what CAA is? I found NCF. Masschusetts CFIDS

> webpage had a lot of very useful information.

>

> Mike, I am considering Dr. Larry Sharp in Fort Worth. He seems

to

> follow Dr. Cheney's research. If you have an opinion, would you

be

> so kind as to back-channel me? Dr. Salvato in Houston is

presenting

> at the Houston CFIDS group on 11/14. I am planning on going to

see

> where she stands with the newest developments. Trying to find a

Dr.

> that can run some tests so I have medical documentation AND

maybe

> some relief!

>

> Thanks again,

> Marti Z.

> Houston

[Guest guest]

Thanks Mike,

I noted your post on CD4/CD8. Trying to get as much covered through

county insurance which is restrictive plus PCP that is not too

knowledgeable.

Thanks again,

Marti

>

> Marti-I posted to you on this thread about the CD8/CD4

abnormalities.

> That was what Dr. Salvato was in to when I saw her, along w/ other

> blood test abnormalities. I have a letter from her to my PCP

> indicating that my blood tests were what was usually found in CFS

> patients.

>

> If you go to Dr. Sharpe and he is piggy-backing off of Cheney (maybe

> that is why Cheney spoke in Ft. Worth so he could meet w/ Sharpe),

> from what I know the new Cheney stuff won't help you all that much

> with disability. Now, if you went to see Cheney in NC, that is a

> different story.

>

> Since you live in/near Houston, I would suggest to try Salvato

first.

> FWIW, she also ran b-cell tests and maybe now she has other tests

> that show how CFS patients are different from controls. I would

> definitely go see her if I were considering appplying for

disability.

>

> Mike C

>

>

>

>

> > Katrina, Mike & Others,

> > Thank you for your help. I have joined disinsissues. Can't

> search

> > old posts. Found their links page very helpful. Still

> searching and

> > learning. They have been helpful but no real info yet on tests

> I can

> > take to my current, non-CFIDS doctor.

> >

> > I know this group has had much experience in this arena and

most

> are

> > too ill to belong to other groups. My post was kind of

> wondering if

> > the latest advancements have translated to better/easier

proving

> of

> > disability or illness. I know the genetic stuff is too new but

> I was

> > wondering if there were other tests from the years I was away

> > (struggling NOT to be disabled).

> >

> > I did actually find the SS Disability definition of CFIDS.

> >

> > > > They may be at CAA, NCF, or other websites.

> > Can you tell me what CAA is? I found NCF. Masschusetts CFIDS

> > webpage had a lot of very useful information.

> >

> > Mike, I am considering Dr. Larry Sharp in Fort Worth. He seems

> to

> > follow Dr. Cheney's research. If you have an opinion, would

you

> be

> > so kind as to back-channel me? Dr. Salvato in Houston is

> presenting

> > at the Houston CFIDS group on 11/14. I am planning on going to

> see

> > where she stands with the newest developments. Trying to find

a

> Dr.

> > that can run some tests so I have medical documentation AND

> maybe

> > some relief!

> >

> > Thanks again,

> > Marti Z.

> > Houston

>

[Guest guest]

>

> Hello all,

> Requesting advice/opinions on the tests that I should have done to

> document my illness for disability purposes. I have insurance but it

> is very restrictive so it will have to be out of pocket. For that

> reason, I am trying to discover the most indicative tests.

>

> Does anyone have experience with the tests that mean something to SSI?

>

> My thoughts: the tilt table test showing orthostatic intolerance...

> Really brain-fogged and not sure how to prove my illness/disability.

>

> Thank you,

> Marti Z.

>

If u have moderate-severe cognitive problems u might also consider

having a SPECT scan and neuropsychological testing. The latter requires

extensive testing of memory, concentration, cognitive abilities over 2

days. Also as u mentioned, a Tilt Table test.

Zuzu

[Guest guest]

Thanks Zuzu,

Is it possible to have a SPECT scan or any other test

without a Doctor's help, even if I pay for it?

Has anyone done that?

Based on archives and responses to my initial

question, I have a list of tests that I think would be

helpful but a Doctor that is a little reluctant to try

new tests (plus very restrictive insurance).

Marti

__________________________________________________

[Guest guest]

>

> Thanks Zuzu,

> Is it possible to have a SPECT scan or any other test

> without a Doctor's help, even if I pay for it?

>

> Has anyone done that?

>

> Based on archives and responses to my initial

> question, I have a list of tests that I think would be

> helpful but a Doctor that is a little reluctant to try

> new tests (plus very restrictive insurance).

>

> Marti

>

>

> Your best chance as previously mentioned is to find a CFIDS doctor

who will work with you to help u get disability. Is your doctors

reluctance to order tests based on the fact that he/she doesn't think

your insurance will cover them? Or is he/she unfamiliar with

interpreting these tests?

> Of course u could always pay for them out-of-pocket, but the 2 tests

I mentioned are expensive. About 2K each, or close to that. U will

definately need a doctor to order the SPECT scan. I'm not sure if u

need a doctor to order the Neuropsychological testing to be done.

Zuzu

[Guest guest]

>

> Your best chance as previously mentioned is to find

a CFIDS doctor

who will work with you to help u get disability. Is

your doctors

reluctance to order tests based on the fact that

he/she doesn't think

your insurance will cover them? Or is he/she

unfamiliar with

interpreting these tests?

> Of course u could always pay for them out-of-pocket,

but the 2 tests

I mentioned are expensive. About 2K each, or close to

that. U will

definately need a doctor to order the SPECT scan. I'm

not sure if u

need a doctor to order the Neuropsychological testing

to be done.

Zuzu

Zuzu,

It is both, really. My insurance is very restrictive

(county insurance) and really only covers treatment

not diagnostic testing and certainly not diagnostic

testing to prove illness or disability.

Thanks, again,

Marti

__________________________________________________