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I was wondering if anybody has

had any luck with social security disability? I work as a medical

transcriptionist and my doctor says I probably cannot return to my

current job as a transcriptionist, but I will be "employable".

When I went out on SSDI 6 yrs ago, I applied for SSDI and my Longterm disability from my employer. Boy am I glad I marked that box. AT & T has to match my SSDI until I turn 65, and they supply my UHC- which is my drug coverage.

We have alot of posts on SSDI in the ARCHIVES and LINKS section.

Since you've been out 6 mo- and know are out again- it's time to start the paperwork.

Many people will tell you to get an attorney from the start. I didn't need one, and mine went thru the 1st time out.

I would get the brochure from FSR--www.stopsarcoidosis.org. That explains what this disease does when it is systemic.

You will need letters from friends and coworkers-- I had a very dear friend- that I met while working as her boss- write a letter where she stated that talking with me was like dealing with an "early Alzheimers" patient. This was so far opposite from what I had been capable of when we worked together, that it was very difficult for her to deal with.

I had another ex-coworker write a letter in where she stated that I had been her teacher, training a staff of 21 people computer programs for an Ophthalmology practice, back-office, bookkeeping, etc-- and at that point could no longer multi-task, or even explain simple issues.

My pain level was thru the roof, so I was put on Oramorph, and was a basket case.

One of my MD's stated that multi-system sarc- NS, was like having Dementia, Multiple Sclerosis, Peripheral Neuropathy and Rheumatoid Arthritis all wrapped in one.

Although I do have the dementia, the weakness of muscles and ligaments, and the neuropathy, along with now- sarc induced arthritis, RA and Osteoarthritis-- my pain is finally controlled by the combination of meds I am on.

The fatigue and exhaustion is still so far beyond what the "flu" or "pneumonia" causes-- that I'm still not worth peanuts-- but at least I can still get around.

I just have to pace myself.

Your MD is wanting to let you know that you may be able to work, so keep the faith. However, he's not being realistic, and you may very well need to seek someone that will get the documentation together so that you can get your SSDI.

With the tests that show the granulomas in your spine (arthritis) and the pulmonary issues, as well as cognitive issues, all documented, you shouldn't have a problem.

When you fill out the paperwork, make sure that you explain what you can NO LONGER DO-- and explain how you've been off work for 6 months last yr, then again 3 mo this year--etc.

Those best friends that have seen the changes in you-- have them put them in writing. Even a current manager can do that (if they are a good friend and won't put it in your employment folder)-- it you've already got the write up that if you don't perform-- then get a copy of it-- add it to the paperwork you submit to SSDI.

They will ask for copies of all your medical records-- so release them.

If you've not had Neuropsych testing done, this can be a real case closer for you-- because it will show the cognitive changes, the short-term memory loss, the problem solving losses, etc.

Labs, X-rays, CT's, Mri's, Spinal taps-- etc all will be needed.

Sometimes it happens really quickly, and some people will be denied once or twice. If you are denied, then get the attorney.

Advanced sarcoidosis is getting some press, and if the MD explains that you are in the minority that end up with a serious case of sarc-- that can't be controlled with prednisone-- and that you will be on immunosupressive drugs from here out-- it will go thru much easier.

In the LINKS- you will find articles that explain what happens with sarc- the Seizures and sarcoidosis (Epilepsy) article is great, the FSR brochure, articles on sarcoid induced arthritis are there.

You are welcome to print them out and take them to the MD with you.

Does this mean that you will never work again? It is possible that you might not work again, but we can all hope that sometime they will find the combination of meds to get us back to functioning at the level we'd like.

However, do not beat yourself up because your role in your life has changed. For now, the goal should be to get yourself as WELL as possible.

That requires rest, pacing yourself, listening to your body before it lays you out for months on end, and working with your MD's to find a combination of meds that will stop the progression of your sarcoidosis.

take care, and do scroll down to find the LINKS and ARCHIVES-- the address is below the signature lines on all the email that comes from the group.

Sincerely,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

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Tracie,your don't even know how much that helps. Thank you so much.

Lori

>

> In a message dated 4/8/07 6:01:40 PM Pacific Daylight Time,

> luluchevy@... writes:

>

>

> > I was wondering if anybody has

> > had any luck with social security disability? I work as a medical

> > transcriptionist and my doctor says I probably cannot return to

my

> > current job as a transcriptionist, but I will be " employable " .

>

> When I went out on SSDI 6 yrs ago, I applied for SSDI and my

Longterm

> disability from my employer. Boy am I glad I marked that box.

AT&T has to match my

> SSDI until I turn 65, and they supply my UHC- which is my drug

coverage.

> We have alot of posts on SSDI in the ARCHIVES and LINKS section.

> Since you've been out 6 mo- and know are out again- it's time to

start the

> paperwork.

> Many people will tell you to get an attorney from the start. I

didn't need

> one, and mine went thru the 1st time out.

> I would get the brochure from FSR--www.stopsarcoidosis.org. That

explains

> what this disease does when it is systemic.

> You will need letters from friends and coworkers-- I had a very

dear friend-

> that I met while working as her boss- write a letter where she

stated that

> talking with me was like dealing with an " early Alzheimers "

patient. This was so

> far opposite from what I had been capable of when we worked

together, that

> it was very difficult for her to deal with.

> I had another ex-coworker write a letter in where she stated that I

had been

> her teacher, training a staff of 21 people computer programs for an

> Ophthalmology practice, back-office, bookkeeping, etc-- and at that

point could no

> longer multi-task, or even explain simple issues.

> My pain level was thru the roof, so I was put on Oramorph, and was

a basket

> case.

> One of my MD's stated that multi-system sarc- NS, was like having

Dementia,

> Multiple Sclerosis, Peripheral Neuropathy and Rheumatoid Arthritis

all wrapped

> in one.

> Although I do have the dementia, the weakness of muscles and

ligaments, and

> the neuropathy, along with now- sarc induced arthritis, RA and

Osteoarthritis--

> my pain is finally controlled by the combination of meds I am on.

> The fatigue and exhaustion is still so far beyond what the " flu " or

> " pneumonia " causes-- that I'm still not worth peanuts-- but at

least I can still get

> around.

> I just have to pace myself.

> Your MD is wanting to let you know that you may be able to work, so

keep the

> faith. However, he's not being realistic, and you may very well

need to seek

> someone that will get the documentation together so that you can

get your

> SSDI.

> With the tests that show the granulomas in your spine (arthritis)

and the

> pulmonary issues, as well as cognitive issues, all documented, you

shouldn't have

> a problem.

> When you fill out the paperwork, make sure that you explain what

you can NO

> LONGER DO-- and explain how you've been off work for 6 months last

yr, then

> again 3 mo this year--etc.

> Those best friends that have seen the changes in you-- have them

put them in

> writing. Even a current manager can do that (if they are a good

friend and

> won't put it in your employment folder)-- it you've already got the

write up

> that if you don't perform-- then get a copy of it-- add it to the

paperwork you

> submit to SSDI.

> They will ask for copies of all your medical records-- so release

them.

> If you've not had Neuropsych testing done, this can be a real case

closer for

> you-- because it will show the cognitive changes, the short-term

memory loss,

> the problem solving losses, etc.

> Labs, X-rays, CT's, Mri's, Spinal taps-- etc all will be needed.

> Sometimes it happens really quickly, and some people will be denied

once or

> twice. If you are denied, then get the attorney.

> Advanced sarcoidosis is getting some press, and if the MD explains

that you

> are in the minority that end up with a serious case of sarc-- that

can't be

> controlled with prednisone-- and that you will be on

immunosupressive drugs from

> here out-- it will go thru much easier.

> In the LINKS- you will find articles that explain what happens

with sarc-

> the Seizures and sarcoidosis (Epilepsy) article is great, the FSR

brochure,

> articles on sarcoid induced arthritis are there.

> You are welcome to print them out and take them to the MD with

you.

> Does this mean that you will never work again? It is possible that

you might

> not work again, but we can all hope that sometime they will find

the

> combination of meds to get us back to functioning at the level we'd

like.

> However, do not beat yourself up because your role in your life has

changed.

> For now, the goal should be to get yourself as WELL as possible.

> That requires rest, pacing yourself, listening to your body before

it lays

> you out for months on end, and working with your MD's to find a

combination of

> meds that will stop the progression of your sarcoidosis.

>

> take care, and do scroll down to find the LINKS and ARCHIVES-- the

address is

> below the signature lines on all the email that comes from the

group.

>

> Sincerely,

> Tracie

> NS Co-owner/moderator

>

>

> **************************************

> See what's free

> at http://www.aol.com.

>

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  • 11 months later...
Guest guest

Hi ,

Sounds like you ended up firing up that old immune

system to it's max-- and trying to heal from the

accident on top of the sarc is a major challenge.

As for SSDI, the first thing you do is file for your

State Disability. Generally this lasts for the first

12 months. Six months into that time frame (now) you

need to start the process for SSDI.

Get ahold of Social Security and request the forms.

They will send you a packet of what you need to fill

out. It will also include a release for medical

records.

It is so very important that when you explain why you

can't work-- that you explain in detail what happens

when you try to walk, when you try to sit for any

length of time, the effects that the NS has on your

cognitive skills.

If you have short-term memory loss- explain it. If

you have numbness in your extremities, explain it.

Detail what you can no longer do-- don't go into what

you can do.

If you need help in any Activities of Daily

Living--ie. showering, cooking, cleaning, shopping,

keeping house, paying bills, explain what you've lost.

If you suffer from depression secondary to your

injuries, explain it.

You'll need a couple of letters from friends and

co-workers that can tell SSDI what you did and what

you cna no longer do.

For instance, one of the women I used to work with,

and had trained for her job, wrote that I was an

extremely compentent manager, multi-tasker, problem

solver-- and that the NS had made it so that talking

with me was like talking with a patient in the first

stages of Alzheimers. One minute I was totally clear,

the next- I had no idea what I'd just been told, or

what I'd explained- so I'd start over-- and over and

over.

Another explained that watching me work was heart

breaking, in as much as I'd start a project, but it

took a trip to get the paper, then a trip to get the

inkpens, then another trip to get something else-- and

then by the time I had all I needed together, I

couldn't remember what i was going to do-- and I'd be

destracted by a phone call- and not get back to the

original task for hours.

This was all confirmed by the Neuropsych testing--

which I flunked horribly.

I had also become inappropriate with what I would

say-- and I had no idea what I had said-- not good in

a world of harrassment lawsuits.

As for the time frame-- one thing SSDI does is look at

what you would have gotten paid if you were on SSDI--

and if your State Disability is less, they will make

up the difference. So getting started early - at the

6th month, is important. It can take 6 months to 2

yrs to get approved. However, you will be paid

retroactively to the time you first filed. DO NOT MISS

ANY APPEALS DATE-- OR YOU START OVER- AND THAT LATER

DATE WOULD BECOME YOUR START DATE FOR RETRO-ACTIVE

PAY.

At the 1 yr anniversary of your disabilty, if you've

been approved for SSDI, you would start getting

monthly payments at that time.

At the 2 yr anniversary of your disability, if you've

been approved for SSDI, you will be enrolled in

Medicare Part A and Part B and D. You don't pay a

monthly premium for Part A--Hospitalization, but you

do pay a monthly premium for Part B and D-- Medical

and drugs.

It is imperative that you take the insurance when

offered- and make a choice for your drug coverage.

Otherwise, you don't get a guaranteed enrollment until

you turn 65. If you have a Long-term disabilty

program through your employer-- sometimes that will

give you secondary coverage or prescription drug

coverage--so you'll want to educate yourself on the

different choices.

Some people will tell you to get an attorney right off

the bat. I don't feel it's necessary-- if your

medical records state that you are disabled and spell

it out as to what you cna't do. So make sure you

aren't holding back anything from your docs. ANY

problems you are encountering-- whether it's your

personal relationship that have taken hits, sexual

difficulties, work relationships or any ADL (activity

of daily living) tell the docs. Get it in your

charts.

Another thing that helped me was that my docs

explained that multisystem sarcoidosis was like having

MS, Rheumatoid Arthritis, Peripheral Neuropathy,

Dementia and Chronic Fatigue all wrapped into one.

That gave SSDI an idea of how to guage the manner of

disabilty. No-- I don't have all of those (4/5 but

who's counting) but they have criteria for those

diseases. NS is new to them- and so many have the old

1953 Merck Manual that says this will burn itself out

in 2 yrs, and you'll never know you had it. (Boy

don't we wish).

One other thing-- in our ARCHIVES and LINKS-- we have

a huge number of articles that explain various

sarcoidosis issues-- print out the ones that you feel

will help your case- and send them in with your

records.

The address for the A & L's are at the bottom of this

and every email that comes from the group.

Sincerely,

Tracie

NS Co-owner/moderator

--- Gutknecht wrote:

> I suffer from this debilitating diseases I am trying

> to seek info about being eligible for social

> security disability and the process to get there. I

> am unable to work now because of NS causing severe

> foot drop in my right leg making walking very

> difficult I also have very bad balance and tremors

> in all extremities. I was in a ATV accident on

> 6/12/07 causing a T12 burst fracture on 7/13/08 I

> had back surgery now I have two screws in T11 and

> two screws in L1 and rods connecting them. This of

> course did not help my situation at all but make it

> a lot worse. Please if any one has experience in

> this area any information will be greatly

> appreciated. Thank you all

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Guest guest

Hi ,

Sounds like you ended up firing up that old immune

system to it's max-- and trying to heal from the

accident on top of the sarc is a major challenge.

As for SSDI, the first thing you do is file for your

State Disability. Generally this lasts for the first

12 months. Six months into that time frame (now) you

need to start the process for SSDI.

Get ahold of Social Security and request the forms.

They will send you a packet of what you need to fill

out. It will also include a release for medical

records.

It is so very important that when you explain why you

can't work-- that you explain in detail what happens

when you try to walk, when you try to sit for any

length of time, the effects that the NS has on your

cognitive skills.

If you have short-term memory loss- explain it. If

you have numbness in your extremities, explain it.

Detail what you can no longer do-- don't go into what

you can do.

If you need help in any Activities of Daily

Living--ie. showering, cooking, cleaning, shopping,

keeping house, paying bills, explain what you've lost.

If you suffer from depression secondary to your

injuries, explain it.

You'll need a couple of letters from friends and

co-workers that can tell SSDI what you did and what

you cna no longer do.

For instance, one of the women I used to work with,

and had trained for her job, wrote that I was an

extremely compentent manager, multi-tasker, problem

solver-- and that the NS had made it so that talking

with me was like talking with a patient in the first

stages of Alzheimers. One minute I was totally clear,

the next- I had no idea what I'd just been told, or

what I'd explained- so I'd start over-- and over and

over.

Another explained that watching me work was heart

breaking, in as much as I'd start a project, but it

took a trip to get the paper, then a trip to get the

inkpens, then another trip to get something else-- and

then by the time I had all I needed together, I

couldn't remember what i was going to do-- and I'd be

destracted by a phone call- and not get back to the

original task for hours.

This was all confirmed by the Neuropsych testing--

which I flunked horribly.

I had also become inappropriate with what I would

say-- and I had no idea what I had said-- not good in

a world of harrassment lawsuits.

As for the time frame-- one thing SSDI does is look at

what you would have gotten paid if you were on SSDI--

and if your State Disability is less, they will make

up the difference. So getting started early - at the

6th month, is important. It can take 6 months to 2

yrs to get approved. However, you will be paid

retroactively to the time you first filed. DO NOT MISS

ANY APPEALS DATE-- OR YOU START OVER- AND THAT LATER

DATE WOULD BECOME YOUR START DATE FOR RETRO-ACTIVE

PAY.

At the 1 yr anniversary of your disabilty, if you've

been approved for SSDI, you would start getting

monthly payments at that time.

At the 2 yr anniversary of your disability, if you've

been approved for SSDI, you will be enrolled in

Medicare Part A and Part B and D. You don't pay a

monthly premium for Part A--Hospitalization, but you

do pay a monthly premium for Part B and D-- Medical

and drugs.

It is imperative that you take the insurance when

offered- and make a choice for your drug coverage.

Otherwise, you don't get a guaranteed enrollment until

you turn 65. If you have a Long-term disabilty

program through your employer-- sometimes that will

give you secondary coverage or prescription drug

coverage--so you'll want to educate yourself on the

different choices.

Some people will tell you to get an attorney right off

the bat. I don't feel it's necessary-- if your

medical records state that you are disabled and spell

it out as to what you cna't do. So make sure you

aren't holding back anything from your docs. ANY

problems you are encountering-- whether it's your

personal relationship that have taken hits, sexual

difficulties, work relationships or any ADL (activity

of daily living) tell the docs. Get it in your

charts.

Another thing that helped me was that my docs

explained that multisystem sarcoidosis was like having

MS, Rheumatoid Arthritis, Peripheral Neuropathy,

Dementia and Chronic Fatigue all wrapped into one.

That gave SSDI an idea of how to guage the manner of

disabilty. No-- I don't have all of those (4/5 but

who's counting) but they have criteria for those

diseases. NS is new to them- and so many have the old

1953 Merck Manual that says this will burn itself out

in 2 yrs, and you'll never know you had it. (Boy

don't we wish).

One other thing-- in our ARCHIVES and LINKS-- we have

a huge number of articles that explain various

sarcoidosis issues-- print out the ones that you feel

will help your case- and send them in with your

records.

The address for the A & L's are at the bottom of this

and every email that comes from the group.

Sincerely,

Tracie

NS Co-owner/moderator

--- Gutknecht wrote:

> I suffer from this debilitating diseases I am trying

> to seek info about being eligible for social

> security disability and the process to get there. I

> am unable to work now because of NS causing severe

> foot drop in my right leg making walking very

> difficult I also have very bad balance and tremors

> in all extremities. I was in a ATV accident on

> 6/12/07 causing a T12 burst fracture on 7/13/08 I

> had back surgery now I have two screws in T11 and

> two screws in L1 and rods connecting them. This of

> course did not help my situation at all but make it

> a lot worse. Please if any one has experience in

> this area any information will be greatly

> appreciated. Thank you all

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