Re: Re: Thanks Laurie and Disability question

[Guest guest]

Ah a, not fun at all. Not the way you wanted to bring in the new

year I am guessing. Did you get any good celebratory IV's for New Years

Eve?

I'm very glad you are home and hope you get to stay there for a good

long time.

Hugs,

a C Koch wrote:

>Laurie,

> Thanks. It was a long stay this time, at least for me, as it

>ended up being about 22 days. I went in with stroke like episodes, but

>then had to have my central line replaced, and my bronchitis turned into

>pneumonia (although we caught that early), so we certainly kept things

>interesting! I have been home for a little over a week and have been

>pretty tired. I am trying to pace myself, but also see how much stuff

>needs to get done around the apartment. I am trying to take it easy and

>realizing that it was a very good decision for me to resign this past

>November! I am still hoping to volunteer for a couple hours a week when

>I have regained some strength. I haven't been on the computer much,

>which is why it has taken me awhile to answer this.

> I have a question for those on Soc. Sec. Disability and those who

>have filed for it. I am going under a review for my disability. I went

>under review this past summer, but they feel more information is

>necessary. What did you all put down for your medical reason for

>disability? I know Mitochondrial Disease might not be known, especially

>around here. Did you state that it fell under the umbrella of diseases

>covered by MDA? I am also trying to decide what doctors to write down,

>as some doctors only see me twice a year and don't understand why I

>stopped working. Did you all put down all your doctors? I can't

>remember what I did for my initial application and can not find it.

>Thanks in advance for your help.

>Smiles,

>a

>

>On Tue, 17 Jan 2006 13:03:31 -0500 Laurie Fitzgerald

>laurie.fitzgerald@...> writes:

>a

>

>I am glad you are home from the hospital. How are you feeling?

>

>Hugs,

>laurie

>

>

>

>

>> Ann-Marie,

>> During this past hospital stay, my neurologist suggested

>>

>>

>changing

>

>

>> from Neurontin to Lyrica. We didn't make any changes yet, as we were

>>

>>

>to

>

>

>> busy with med issues in the hospital, but he wants to pick this

>> discussion back up at my follow up appointment. Sorry I don't have

>>

>>

>any

>

>

>> experience with it, but I do know that my neurologist is starting to

>>

>>

>use

>

>

>> it in many patients for neuropathy.

>>

>> Smiles,

>> a

>>

>>

>

>

[Guest guest]

I don't have any personal experience with filing, but I do know that

some people have filed under all the different physical ailments that

mito has caused you and how all those impact your life. Things they

know about and have at least heard of. I would put down all the docs.

Just my two cents worth from what some others have done, not me though,

sorry.

> I have a question for those on Soc. Sec. Disability and those who

>have filed for it. I am going under a review for my disability. I went

>under review this past summer, but they feel more information is

>necessary. What did you all put down for your medical reason for

>disability? I know Mitochondrial Disease might not be known, especially

>around here. Did you state that it fell under the umbrella of diseases

>covered by MDA? I am also trying to decide what doctors to write down,

>as some doctors only see me twice a year and don't understand why I

>stopped working. Did you all put down all your doctors? I can't

>remember what I did for my initial application and can not find it.

>Thanks in advance for your help.

>Smiles,

>a

>

>

>

[Guest guest]

,

Thanks, I am also hoping to stay home for a long time! I figure

that starting out the new year in the hospital means that I won't be in

again for the rest of the year. :-) I hope you are doing well.

Smiles,

a

On Fri, 20 Jan 2006 14:08:40 -0800 dgregori dgregori@...>

writes:

Ah a, not fun at all. Not the way you wanted to bring in the new

year I am guessing. Did you get any good celebratory IV's for New Years

Eve?

I'm very glad you are home and hope you get to stay there for a good

long time.

Hugs,

a C Koch wrote:

>Laurie,

> Thanks. It was a long stay this time, at least for me, as it

>ended up being about 22 days. I went in with stroke like episodes, but

>then had to have my central line replaced, and my bronchitis turned into

>pneumonia (although we caught that early), so we certainly kept things

>interesting! I have been home for a little over a week and have been

>pretty tired. I am trying to pace myself, but also see how much stuff

>needs to get done around the apartment. I am trying to take it easy and

>realizing that it was a very good decision for me to resign this past

>November! I am still hoping to volunteer for a couple hours a week when

>I have regained some strength. I haven't been on the computer much,

>which is why it has taken me awhile to answer this.

> I have a question for those on Soc. Sec. Disability and those

who

>have filed for it. I am going under a review for my disability. I went

>under review this past summer, but they feel more information is

>necessary. What did you all put down for your medical reason for

>disability? I know Mitochondrial Disease might not be known, especially

>around here. Did you state that it fell under the umbrella of diseases

>covered by MDA? I am also trying to decide what doctors to write down,

>as some doctors only see me twice a year and don't understand why I

>stopped working. Did you all put down all your doctors? I can't

>remember what I did for my initial application and can not find it.

>Thanks in advance for your help.

>Smiles,

>a

>

>On Tue, 17 Jan 2006 13:03:31 -0500 Laurie Fitzgerald

>laurie.fitzgerald@...> writes:

>a

>

>I am glad you are home from the hospital. How are you feeling?

>

>Hugs,

>laurie

[Guest guest]

and Joanne,

Thanks, I did put down all the different physical ailments that

mito has caused. I will be sending a copy of what I take to each doctor,

which includes meds, allergies, surgeries and hospital stays, diagnosis

and doctors. I didn't have as much going on when I was approved the

first time, as I do now, so hopefully this review won't be anything to

worry about.

Smiles,

a

On Fri, 20 Jan 2006 14:22:02 -0800 dgregori dgregori@...>

writes:

I don't have any personal experience with filing, but I do know that

some people have filed under all the different physical ailments that

mito has caused you and how all those impact your life. Things they

know about and have at least heard of. I would put down all the docs.

Just my two cents worth from what some others have done, not me though,

sorry.

> I have a question for those on Soc. Sec. Disability and those

who

>have filed for it. I am going under a review for my disability. I went

>under review this past summer, but they feel more information is

>necessary. What did you all put down for your medical reason for

>disability? I know Mitochondrial Disease might not be known, especially

>around here. Did you state that it fell under the umbrella of diseases

>covered by MDA? I am also trying to decide what doctors to write down,

>as some doctors only see me twice a year and don't understand why I

>stopped working. Did you all put down all your doctors? I can't

>remember what I did for my initial application and can not find it.

>Thanks in advance for your help.

>Smiles,

>a

>

>

>

Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of

this e mail is entirely responsible for its content. List members are

reminded of their responsibility to evaluate the content of the postings

and consult with their physicians regarding changes in their own

treatment.

Personal attacks are not permitted on the list and anyone who sends one

is automatically moderated or removed depending on the severity of the

attack.

[Guest guest]

a

I have not heard of a rejection on my application for SSDI, but I do

remember that I gave them as many recent reports as I had, along with

all the doctor's names. I talked with my MDA doc, as he is the most

familiar with mito and also the disability system. He said he would

send them copies of my entire chart (all 4-5 inches of it) if need be.

Good luck with this review.

laurie

> Laurie,

> Thanks. It was a long stay this time, at least for me, as it

> ended up being about 22 days. I went in with stroke like episodes, but

> then had to have my central line replaced, and my bronchitis turned into

> pneumonia (although we caught that early), so we certainly kept things

> interesting! I have been home for a little over a week and have been

> pretty tired. I am trying to pace myself, but also see how much stuff

> needs to get done around the apartment. I am trying to take it easy and

> realizing that it was a very good decision for me to resign this past

> November! I am still hoping to volunteer for a couple hours a week when

> I have regained some strength. I haven't been on the computer much,

> which is why it has taken me awhile to answer this.

> I have a question for those on Soc. Sec. Disability and those who

> have filed for it. I am going under a review for my disability. I went

> under review this past summer, but they feel more information is

> necessary. What did you all put down for your medical reason for

> disability? I know Mitochondrial Disease might not be known, especially

> around here. Did you state that it fell under the umbrella of diseases

> covered by MDA? I am also trying to decide what doctors to write down,

> as some doctors only see me twice a year and don't understand why I

> stopped working. Did you all put down all your doctors? I can't

> remember what I did for my initial application and can not find it.

> Thanks in advance for your help.

> Smiles,

> a

>

> On Tue, 17 Jan 2006 13:03:31 -0500 Laurie Fitzgerald

> laurie.fitzgerald@...> writes:

> a

>

> I am glad you are home from the hospital. How are you feeling?

>

> Hugs,

> laurie

>

>

> > Ann-Marie,

> > During this past hospital stay, my neurologist suggested

> changing

> > from Neurontin to Lyrica. We didn't make any changes yet, as we were

> to

> > busy with med issues in the hospital, but he wants to pick this

> > discussion back up at my follow up appointment. Sorry I don't have

> any

> > experience with it, but I do know that my neurologist is starting to

> use

> > it in many patients for neuropathy.

> >

> > Smiles,

> > a

>

>

[Guest guest]

I guess in some ways then, more is better. :-)

I'm sure it will be fine if this is only a review. I'll be thinking

good thoughts for you though.

a C Koch wrote:

> and Joanne,

> Thanks, I did put down all the different physical ailments that

>mito has caused. I will be sending a copy of what I take to each doctor,

>which includes meds, allergies, surgeries and hospital stays, diagnosis

>and doctors. I didn't have as much going on when I was approved the

>first time, as I do now, so hopefully this review won't be anything to

>worry about.

>Smiles,

>a

>

>On Fri, 20 Jan 2006 14:22:02 -0800 dgregori dgregori@...>

>writes:

>I don't have any personal experience with filing, but I do know that

>some people have filed under all the different physical ailments that

>mito has caused you and how all those impact your life. Things they

>know about and have at least heard of. I would put down all the docs.

>Just my two cents worth from what some others have done, not me though,

>sorry.

>

>

>

>

>

>

>> I have a question for those on Soc. Sec. Disability and those

>>

>>

>who

>

>

>>have filed for it. I am going under a review for my disability. I went

>>under review this past summer, but they feel more information is

>>necessary. What did you all put down for your medical reason for

>>disability? I know Mitochondrial Disease might not be known, especially

>>around here. Did you state that it fell under the umbrella of diseases

>>covered by MDA? I am also trying to decide what doctors to write down,

>>as some doctors only see me twice a year and don't understand why I

>>stopped working. Did you all put down all your doctors? I can't

>>remember what I did for my initial application and can not find it.

>>Thanks in advance for your help.

>>Smiles,

>>a

>>

>>

>>

>>

>>

>

>

>

>Medical advice, information, opinions, data and statements contained

>herein are not necessarily those of the list moderators. The author of

>this e mail is entirely responsible for its content. List members are

>reminded of their responsibility to evaluate the content of the postings

>and consult with their physicians regarding changes in their own

>treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one

>is automatically moderated or removed depending on the severity of the

>attack.

>

>

>

>

>

>

[Guest guest]

I would add, besides ALL medical reports, IMHO the best, gold-standard aid to

getting SSDI is one letter that is all of the following:

From a doctor that has seen you recently and at least now and then for a couple

of years previous.

States the name of your disease/category and that you are diagnosed with it.

States in general terms the symptoms/problems that are known to be caused by the

disease.

States which of the above symptoms/problems you have exhibited.

States when approx. these symptoms/problems began, and that they are very likely

to persist for your lifetime.

States that these symptoms/problems make it impossible for you to work.

This last item is the most important. I've found out the hard way that, unless

your disease is on a short " automatic " list, they don't really care WHAT you

have so much as HOW it affects you. They don't understand these " new-fangled "

diseases, and (strange to me) the Disability Determination Service (DDS) doesn't

either! And furthermore, they generally don't care much at all if YOU report

specific difficulties, or your overall condition, although they DO notice what

you put down. However, they attach almost full exclusive weight to that

" recently-seen and ongoing " doctor, especially if he/she is a specialist. So my

recommendation is to report your issues to your doctor, in writing and verbally,

as frequently and as emphasized as you can, and either get your written list

into their record, or even better get them to write down what you report.

THEN when they write the letter, they will possibly refer to the issue list that

you've provided. In other words, get the doctor's letter to include what you've

told them, as much as possible. That will make the biggest difference with SSDI,

particularly if the issues the doctor cites (because YOU have highlighted them)

are directly related to ability to work. For some reason, they won't trust you

directly, but it doesn't occur to them that some (sympathetic?) doctors will

write that you have symptoms that the doctor hasn't (or can't) verify, such as

PN or headaches, for instance.

Note that point about when the issues began. Seems clueless DDS usually assumes

your problems began about the time of diagnosis, which is esp. NOT true for

mito. If the letter will contradict this assumption explicitly, you have a gem!

Of course, though, there's little point in " back-dating " your symptoms onset

date much earlier than when you last worked. If you did, it could backfire

because it would look like you worked despite the disease. DDS is so out of

touch, they don't seem capable of grasping the notion of gradually worsening

symptoms. The most relevant matter is just that you left your last work because

of your symptoms.

One sticking point is just how forcefully the doctor will write, about your

ability to work (since they can't actually verify much of this). Ideally, this

would include clauses like " Unable to lift or carry office objects " " Unable to

perform any office activities because of dizziness, nausea, exhaustion, [etc.] "

" Inability to concentrate due to headaches, pain from peripheral neuropathy,

[etc.] " and so on.

IMHO it is a value-less red herring to report depression. DDS is liable to go

off on a tangent, thinking that all your symptoms are in your head, and sending

you off for a psych eval. This is almost guaranteed to turn against you, because

the doc they use will likely be a hack willing to accept the cut-rate that DDS

offers, while understanding that they LIKE to get a certain report. Sorry if

this is unfair, but it's my observation.

DDS will also consider whether you are reporting problems that could be

compensated by ADA accomodations in the work setting, just so you know. Also,

they are more likely to approve your claim if there are " only " 10 or 15 years of

coverage before you turn 65 anyway, i.e. if you are 50 or older. Somehow, they

DO get it about the practical aspect of likely ageism one will encounter,

although they won't outright say it.

I've read controversy about whether to tell the doctor you are seeking SSDI. The

argument against, is that some doctors will not cooperate much if they think of

you as kind of a deadbeat. I don't accept this. PROVIDED that you have seen the

doctor several times, I think that's usually enough of a human bond to elicit

some sympathy, esp. if you present this as " Doctor, I've been increasingly ill

for a long time now, and I don't see how I'll ever be able to work again.

Therefore I've reluctantly come to realize that I should try to get a disabilty

pension " . Anyway, the doctor will better understand the specifics of your

request for a letter, if you level with them.

You should be able to get a complete printout of your initial app, esp. if you

visit the SSA office and request it there. You can also find out, from the DDS

office, exactly which records they actually have and are using. Incredibly, they

are perfectly willing to make a determination before all the records come in, in

case there is a delay or something.

One last point, if you get an award, how far back any lump-sum goes depends on

the so-called " protected " filing date. Since this is an expanded review, make

sure they see it as such, i.e. tell them that you understand this review applies

to the original app and ASK what the protected date is, then preferably get

something in writing that says that.

Some REALLY hard-earned advice above. :-) Hope it helps!

Steve D.

Re: Re: Thanks Laurie and Disability question

and Joanne,

Thanks, I did put down all the different physical ailments that

mito has caused. I will be sending a copy of what I take to each doctor,

which includes meds, allergies, surgeries and hospital stays, diagnosis

and doctors. I didn't have as much going on when I was approved the

first time, as I do now, so hopefully this review won't be anything to

worry about.

Smiles,

a

On Fri, 20 Jan 2006 14:22:02 -0800 dgregori dgregori@...>

writes:

I don't have any personal experience with filing, but I do know that

some people have filed under all the different physical ailments that

mito has caused you and how all those impact your life. Things they

know about and have at least heard of. I would put down all the docs.

Just my two cents worth from what some others have done, not me though,

sorry.

> I have a question for those on Soc. Sec. Disability and those

who

>have filed for it. I am going under a review for my disability. I went

>under review this past summer, but they feel more information is

>necessary. What did you all put down for your medical reason for

>disability? I know Mitochondrial Disease might not be known, especially

>around here. Did you state that it fell under the umbrella of diseases

>covered by MDA? I am also trying to decide what doctors to write down,

>as some doctors only see me twice a year and don't understand why I

>stopped working. Did you all put down all your doctors? I can't

>remember what I did for my initial application and can not find it.

>Thanks in advance for your help.

>Smiles,

>a

>

[Guest guest]

Steve

I agree that the doctor's input is the key to success. Muscular

dystrophy is one of the " accepted " diseases if doctor says he were

born with it. So if you see an MDA doc, they are usually agreeable to

stating that the mito is a form of muscular dystrophy that you were

born with.

I also found that if you have been out of work and tried going back,

that you might even get some back pay covering some of the time you

worked. They can pay up to 9 months trial work with payment even while

making an income. According to the lawyer that filed mine, this

doesn't happen often, but is sometimes a possibility.

My work with helping parents fill out SSI forms for their children has

made me realize that the more detailed the information on the form,

the better. Even if they don't read it or it doesn't make sense to

them, the quantity of words makes an impression. The one thing that

they were interested in for SSI and probably the same for SSDI is the

describtion of what you do in a day. Instead of saying that you clean

the house, saying you dust the furniture, rest for an hour, sweep part

of the floor and rest for an hour (if that is what you need to do)

makes an impression.

Between everyone who is dealing with this, all ideas that have created

success are important to everyone.

I would suggest that those who have been denied SSDI in the past, try

again. They are approving more and even looking at past denials

(recent) due to some court action taken against them. It also is more

expensive to reject someone who will eventually qualify.

laurie

> I would add, besides ALL medical reports, IMHO the best, gold-standard aid

> to getting SSDI is one letter that is all of the following:

>

> From a doctor that has seen you recently and at least now and then for a

> couple of years previous.

> States the name of your disease/category and that you are diagnosed with

> it.

> States in general terms the symptoms/problems that are known to be caused

> by the disease.

> States which of the above symptoms/problems you have exhibited.

> States when approx. these symptoms/problems began, and that they are very

> likely to persist for your lifetime.

> States that these symptoms/problems make it impossible for you to work.

>

> This last item is the most important. I've found out the hard way that,

> unless your disease is on a short " automatic " list, they don't really care

> WHAT you have so much as HOW it affects you. They don't understand these

> " new-fangled " diseases, and (strange to me) the Disability Determination

> Service (DDS) doesn't either! And furthermore, they generally don't care

> much at all if YOU report specific difficulties, or your overall condition,

> although they DO notice what you put down. However, they attach almost full

> exclusive weight to that " recently-seen and ongoing " doctor, especially if

> he/she is a specialist. So my recommendation is to report your issues to

> your doctor, in writing and verbally, as frequently and as emphasized as you

> can, and either get your written list into their record, or even better get

> them to write down what you report.

>

> THEN when they write the letter, they will possibly refer to the issue list

> that you've provided. In other words, get the doctor's letter to include

> what you've told them, as much as possible. That will make the biggest

> difference with SSDI, particularly if the issues the doctor cites (because

> YOU have highlighted them) are directly related to ability to work. For some

> reason, they won't trust you directly, but it doesn't occur to them that

> some (sympathetic?) doctors will write that you have symptoms that the

> doctor hasn't (or can't) verify, such as PN or headaches, for instance.

>

> Note that point about when the issues began. Seems clueless DDS usually

> assumes your problems began about the time of diagnosis, which is esp. NOT

> true for mito. If the letter will contradict this assumption explicitly, you

> have a gem! Of course, though, there's little point in " back-dating " your

> symptoms onset date much earlier than when you last worked. If you did, it

> could backfire because it would look like you worked despite the disease.

> DDS is so out of touch, they don't seem capable of grasping the notion of

> gradually worsening symptoms. The most relevant matter is just that you left

> your last work because of your symptoms.

>

> One sticking point is just how forcefully the doctor will write, about your

> ability to work (since they can't actually verify much of this). Ideally,

> this would include clauses like " Unable to lift or carry office objects "

> " Unable to perform any office activities because of dizziness, nausea,

> exhaustion, [etc.] " " Inability to concentrate due to headaches, pain from

> peripheral neuropathy, [etc.] " and so on.

>

> IMHO it is a value-less red herring to report depression. DDS is liable to

> go off on a tangent, thinking that all your symptoms are in your head, and

> sending you off for a psych eval. This is almost guaranteed to turn against

> you, because the doc they use will likely be a hack willing to accept the

> cut-rate that DDS offers, while understanding that they LIKE to get a

> certain report. Sorry if this is unfair, but it's my observation.

>

> DDS will also consider whether you are reporting problems that could be

> compensated by ADA accomodations in the work setting, just so you know.

> Also, they are more likely to approve your claim if there are " only " 10 or

> 15 years of coverage before you turn 65 anyway, i.e. if you are 50 or older.

> Somehow, they DO get it about the practical aspect of likely ageism one will

> encounter, although they won't outright say it.

>

> I've read controversy about whether to tell the doctor you are seeking

> SSDI. The argument against, is that some doctors will not cooperate much if

> they think of you as kind of a deadbeat. I don't accept this. PROVIDED that

> you have seen the doctor several times, I think that's usually enough of a

> human bond to elicit some sympathy, esp. if you present this as " Doctor,

> I've been increasingly ill for a long time now, and I don't see how I'll

> ever be able to work again. Therefore I've reluctantly come to realize that

> I should try to get a disabilty pension " . Anyway, the doctor will better

> understand the specifics of your request for a letter, if you level with

> them.

>

> You should be able to get a complete printout of your initial app, esp. if

> you visit the SSA office and request it there. You can also find out, from

> the DDS office, exactly which records they actually have and are using.

> Incredibly, they are perfectly willing to make a determination before all

> the records come in, in case there is a delay or something.

>

> One last point, if you get an award, how far back any lump-sum goes depends

> on the so-called " protected " filing date. Since this is an expanded review,

> make sure they see it as such, i.e. tell them that you understand this

> review applies to the original app and ASK what the protected date is, then

> preferably get something in writing that says that.

>

> Some REALLY hard-earned advice above. :-) Hope it helps!

>

> Steve D.

>

>

> Re: Re: Thanks Laurie and Disability question

>

>

> and Joanne,

> Thanks, I did put down all the different physical ailments that

> mito has caused. I will be sending a copy of what I take to each doctor,

> which includes meds, allergies, surgeries and hospital stays, diagnosis

> and doctors. I didn't have as much going on when I was approved the

> first time, as I do now, so hopefully this review won't be anything to

> worry about.

> Smiles,

> a

>

> On Fri, 20 Jan 2006 14:22:02 -0800 dgregori dgregori@...>

> writes:

> I don't have any personal experience with filing, but I do know that

> some people have filed under all the different physical ailments that

> mito has caused you and how all those impact your life. Things they

> know about and have at least heard of. I would put down all the docs.

> Just my two cents worth from what some others have done, not me though,

> sorry.

>

>

>

>

> > I have a question for those on Soc. Sec. Disability and those

> who

> >have filed for it. I am going under a review for my disability. I went

> >under review this past summer, but they feel more information is

> >necessary. What did you all put down for your medical reason for

> >disability? I know Mitochondrial Disease might not be known, especially

> >around here. Did you state that it fell under the umbrella of diseases

> >covered by MDA? I am also trying to decide what doctors to write down,

> >as some doctors only see me twice a year and don't understand why I

> >stopped working. Did you all put down all your doctors? I can't

> >remember what I did for my initial application and can not find it.

> >Thanks in advance for your help.

> >Smiles,

> >a

> >

>

>

>