my SSDI exam and PFT (rant)

February 19, 2005

Hi all

Very sorry, but this is a rant. I need to write it down, but you probably

don't need to read it. :-)

Today I got up very early, at great energy cost to me, and drove 2 hours

round-trip, to go to my SSDI-assigned exam and PFT (Pulmonary Function

Test). After a nearly sleepless night worrying about it all, I was wiped

out. The doctor's office was neat but rundown, in an " other side of the

tracks " neighborhood. I believe this doctor was chosen primarily based on

cost. After confirming TWICE with the doctor's office and TWICE with the

SSDI lady ( " Now don't be late, honey, do you know what I mean? " ) for an

appointment nearly THREE MONTHS after I had last sent my SSDI info, believe

me I was ON TIME.

While I filled out the inevitable clipboard sheet, the receptionist was on

the phone. She immediately informed me that, too bad, " they had no time for

me " at the hospital (a seedy place, a couple of blocks down the street).

Seems my PFT would be outsourced there, and it was my doc's policy to not

make the PFT appointment until the patient showed up. This because " a lot of

you people " don't even show up. So, too bad, they would have to re-schedule.

Imagine my reaction! Because my wife will have to drive me, and she is in

school far away, from Mon. - Wed., and I have a great deal of difficulty

getting anywhere in the early morning, the next appointment for that PFT

will have to be three weeks later. The receptionist told me that this would

delay my SSDI application. I'm afraid I laughed out loud. You see, I began

my application an incredible 17 months earlier. So what's another three

weeks? :-) I also gave her a polite but mildly infuriated ear-full, capped

with " I think your policy is rude and insulting. "

Worse, I'm sure the lame PFT they are planning is not going to reveal

anything useful, because SSDI has misunderstood my report of " rapid shallow

breathing with sweating and dizziness " which occurs when I've over-exerted

(i.e. climbing about ten stairs too quickly).

But I did see the doc for ten minutes. The thorough exam involved him

looking at the huge lipomas all over my back, shoulders, and rear neck, and

checking for muscle weakness (he's now probably my tenth doctor who can't

grasp the difference between weakness and exercise intolerance). To his

credit, he did glance over the two articles I had brought, and asked a

couple of questions. He also looked at my printed sheet of two dozen

symptoms that I have. When he came to peripheral neuropathy, he asked me

about my blood sugar. I patiently explained that, yes probably 99.9% of PN

is associated with diabetes, but not me. I don't think he believed me, but

he sure didn't waste his time over a $1 urine test-strip or especially a

frightfully-expensive blood glucose level. He also noticed (as I knew all

too well, having provided the article) that, historically, about 50% of all

cases of MSL are linked to chronic alcoholism, and asked me about my

consumption. I told him that I have only had moderate amounts long ago, but

I'm SURE he didn't believe that one.

More fun: when I got home I called (despite being in near-crash) the SSDI

lady to let her know about the delay. She was in unusually non-listening

form, and vaguely accused me of causing this delay. After some discussion,

she told me that I had last seen " my " doctor back in September, and " they "

like it if this is more recent. This was where I lost it. :-) I told her

that (a) the reason why September was a long time ago was because of THEIR

delay not mine, ( there was no known treatment for my disease and MY

doctor had expressly told me there was no need to see him for another year,

and © she wasn't noticing that I HAD been to several neurological

specialists more recently, which is what actually mattered. I also told her

that my PFT was wrong-headed anyway. I had to spell it out for her that P

stands for Pulmonary, and to my amazement she didn't know what that meant. I

told her it meant LUNGS. This is my MEDICAL EXAMINER at SSDI!!!

She then asked me how old I was. I said, 55, but I was 53 when I began this

application. She said that " wasn't true " . After I helped her look on her

screen for my application date, and proving that I had since then had two

birthdays, she admitted that OK maybe I was right. She then tried to get me

off the phone by saying that everything would be all right, and their job

was to help me. I said (oops) that NO it wasn't, their job was to stall me

until I died! I know, I shouldn't have said that. To her credit, she didn't

just deny my claim immediately and hang up. Instead, she was surprisingly

reassuring. So I really unloaded, and told her how I was just so sick and

tired (LITERALLY) of all this, and she told me that the board was really

good at what they did, and they would give me a fair consideration. I said,

NO THEY WON'T, she asked how I could know that, and I said well look at this

STUPID PFT test, which isn't going to show anything useful. Oh well. I'm

hoping she will eventually lobby " the board " to accept my claim, so she

doesn't have to hear from me anymore (as someone here related).

THEN I called my neurological doctor, the big-shot who writes articles and

is always in Europe delivering talks about how smart he is. Or I should say,

I called his office. To find out why it's been two weeks since I sent them a

release so they could send me my test results (brain MRI, blood mtDNA

screens, and NC/EMG). Cleverly, they twice didn't even pick up, so I left a

(NOT rude) message, about how I had also been promised that the doc would

call me with the results. Later while I was asleep someone called back, said

they would " send the results right away " . Ha, ha, heard that one.

To quote Dave Barry, " I am not making any of this up " . If I had the energy,

all of this would make a good boring book. :-) Sorry, but I told you this

was a rant. Pray for me, that the next time I won't say anything even worse.

Steve D.

February 19, 2005

Hello, Steve

I am really sorry you have to go through all that. I had similar

experiences when I was injured in an auto accident many years ago.

Insurance docs all too frequently have no allegiance to the patient.

Medical personnel and claims people can be incredibly insensitive and

sometimes cruel. Don't question your own sanity or humanity. You

reactions are normal to a very abnormal situation, where health care

providers and claims people all too often are insensitive, ignorant,

and sometimes cruel.

My personal solution was/is to just try to lower my expectations and

minimize medical interactions in my life as much as possible. Not easy

to do, but I decided that my illness is hard enough to deal with, and I

need to try to minimize the very damaging affect of so many ignorant

people. I struggled to work until I could take an early retirement,

and not put myself through the necessity of applying for Social

Security Disability. When I was hurt in another accident, I didn't

even bother trying to talk to the insurance company because I just did

NOT want to go through that hassle again.

Steve, since you don't have the choice of going through that process

right now, please try to continue to use your energy in a

problem-solving mode. Find your personal solution of how you can

minimize the psychological damaging effect of these experiences so that

you can enjoy life within the limits of your physical health.

I went on too long. I just wanted to tell you Steve, that you are not

alone.

Regards

Sunny

Very sorry, but this is a rant. I need to write it down, but you

probably

> don't need to read it. :-)

>

> Today I got up very early, at great energy cost to me, and drove 2

> hours

> round-trip, to go to my SSDI-assigned exam and PFT (Pulmonary Function

> Test). After a nearly sleepless night worrying about it all, I was

> wiped

> out. The doctor's office was neat but rundown, in an " other side of

> the

> tracks " neighborhood. I believe this doctor was chosen primarily

> based on

> cost. After confirming TWICE with the doctor's office and TWICE with

> the

> SSDI lady ( " Now don't be late, honey, do you know what I mean? " ) for

> an

> appointment nearly THREE MONTHS after I had last sent my SSDI info,

> believe

> me I was ON TIME.

>

> While I filled out the inevitable clipboard sheet, the receptionist

> was on

> the phone. She immediately informed me that, too bad, " they had no

> time for

> me " at the hospital (a seedy place, a couple of blocks down the

> street).

> Seems my PFT would be outsourced there, and it was my doc's policy to

> not

> make the PFT appointment until the patient showed up. This because " a

> lot of

> you people " don't even show up. So, too bad, they would have to

> re-schedule.

> Imagine my reaction! Because my wife will have to drive me, and she

> is in

> school far away, from Mon. - Wed., and I have a great deal of

> difficulty

> getting anywhere in the early morning, the next appointment for that

> PFT

> will have to be three weeks later. The receptionist told me that this

> would

> delay my SSDI application. I'm afraid I laughed out loud. You see, I

> began

> my application an incredible 17 months earlier. So what's another

> three

> weeks? :-) I also gave her a polite but mildly infuriated ear-full,

> capped

> with " I think your policy is rude and insulting. "

>

> Worse, I'm sure the lame PFT they are planning is not going to reveal

> anything useful, because SSDI has misunderstood my report of " rapid

> shallow

> breathing with sweating and dizziness " which occurs when I've

> over-exerted

> (i.e. climbing about ten stairs too quickly).

>

> But I did see the doc for ten minutes. The thorough exam involved him

> looking at the huge lipomas all over my back, shoulders, and rear

> neck, and

> checking for muscle weakness (he's now probably my tenth doctor who

> can't

> grasp the difference between weakness and exercise intolerance). To

> his

> credit, he did glance over the two articles I had brought, and asked a

> couple of questions. He also looked at my printed sheet of two dozen

> symptoms that I have. When he came to peripheral neuropathy, he asked

> me

> about my blood sugar. I patiently explained that, yes probably 99.9%

> of PN

> is associated with diabetes, but not me. I don't think he believed

> me, but

> he sure didn't waste his time over a $1 urine test-strip or

> especially a

> frightfully-expensive blood glucose level. He also noticed (as I knew

> all

> too well, having provided the article) that, historically, about 50%

> of all

> cases of MSL are linked to chronic alcoholism, and asked me about my

> consumption. I told him that I have only had moderate amounts long

> ago, but

> I'm SURE he didn't believe that one.

>

> More fun: when I got home I called (despite being in near-crash) the

> SSDI

> lady to let her know about the delay. She was in unusually

> non-listening

> form, and vaguely accused me of causing this delay. After some

> discussion,

> she told me that I had last seen " my " doctor back in September, and

> " they "

> like it if this is more recent. This was where I lost it. :-) I told

> her

> that (a) the reason why September was a long time ago was because of

> THEIR

> delay not mine, ( there was no known treatment for my disease and MY

> doctor had expressly told me there was no need to see him for another

> year,

> and © she wasn't noticing that I HAD been to several neurological

> specialists more recently, which is what actually mattered. I also

> told her

> that my PFT was wrong-headed anyway. I had to spell it out for her

> that P

> stands for Pulmonary, and to my amazement she didn't know what that

> meant. I

> told her it meant LUNGS. This is my MEDICAL EXAMINER at SSDI!!!

>

> She then asked me how old I was. I said, 55, but I was 53 when I

> began this

> application. She said that " wasn't true " . After I helped her look on

> her

> screen for my application date, and proving that I had since then had

> two

> birthdays, she admitted that OK maybe I was right. She then tried to

> get me

> off the phone by saying that everything would be all right, and their

> job

> was to help me. I said (oops) that NO it wasn't, their job was to

> stall me

> until I died! I know, I shouldn't have said that. To her credit, she

> didn't

> just deny my claim immediately and hang up. Instead, she was

> surprisingly

> reassuring. So I really unloaded, and told her how I was just so sick

> and

> tired (LITERALLY) of all this, and she told me that the board was

> really

> good at what they did, and they would give me a fair consideration. I

> said,

> NO THEY WON'T, she asked how I could know that, and I said well look

> at this

> STUPID PFT test, which isn't going to show anything useful. Oh well.

> I'm

> hoping she will eventually lobby " the board " to accept my claim, so

> she

> doesn't have to hear from me anymore (as someone here related).

>

> THEN I called my neurological doctor, the big-shot who writes

> articles and

> is always in Europe delivering talks about how smart he is. Or I

> should say,

> I called his office. To find out why it's been two weeks since I sent

> them a

> release so they could send me my test results (brain MRI, blood mtDNA

> screens, and NC/EMG). Cleverly, they twice didn't even pick up, so I

> left a

> (NOT rude) message, about how I had also been promised that the doc

> would

> call me with the results. Later while I was asleep someone called

> back, said

> they would " send the results right away " . Ha, ha, heard that one.

>

> To quote Dave Barry, " I am not making any of this up " . If I had the

> energy,

> all of this would make a good boring book. :-) Sorry, but I told you

> this

> was a rant. Pray for me, that the next time I won't say anything even

> worse.

>

> Steve D.

>

> 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.

>

February 19, 2005

Hi Steve,

My name is Donna K, I am sorry to hear what you have been going through if I

may ask what state do you live in. I would contact the nearest MDA clinic and go

there and have a exam done by one of their doctors that way you have 2 opinions.

I told them if my son needs an exam that is where we would also go I guess it

would be a second opinion but the MDA doctors are very familar with mito. the

web sight is.

www.mdausa.org/ I live in cleveland there is an adult neuro at the University

hospital in cleveland who does the tilt table test for autonomic testing both my

children had it done . He also does the sweat test which most others do not. I

hope this helps and I would like to wish you the best of luck.

Sincerely,

Donna K

---- Steve micro_choice@...> wrote:

>

> Hi all

>

> Very sorry, but this is a rant. I need to write it down, but you probably

> don't need to read it. :-)

>

> Today I got up very early, at great energy cost to me, and drove 2 hours

> round-trip, to go to my SSDI-assigned exam and PFT (Pulmonary Function

> Test). After a nearly sleepless night worrying about it all, I was wiped

> out. The doctor's office was neat but rundown, in an " other side of the

> tracks " neighborhood. I believe this doctor was chosen primarily based on

> cost. After confirming TWICE with the doctor's office and TWICE with the

> SSDI lady ( " Now don't be late, honey, do you know what I mean? " ) for an

> appointment nearly THREE MONTHS after I had last sent my SSDI info, believe

> me I was ON TIME.

>

> While I filled out the inevitable clipboard sheet, the receptionist was on

> the phone. She immediately informed me that, too bad, " they had no time for

> me " at the hospital (a seedy place, a couple of blocks down the street).

> Seems my PFT would be outsourced there, and it was my doc's policy to not

> make the PFT appointment until the patient showed up. This because " a lot of

> you people " don't even show up. So, too bad, they would have to re-schedule.

> Imagine my reaction! Because my wife will have to drive me, and she is in

> school far away, from Mon. - Wed., and I have a great deal of difficulty

> getting anywhere in the early morning, the next appointment for that PFT

> will have to be three weeks later. The receptionist told me that this would

> delay my SSDI application. I'm afraid I laughed out loud. You see, I began

> my application an incredible 17 months earlier. So what's another three

> weeks? :-) I also gave her a polite but mildly infuriated ear-full, capped

> with " I think your policy is rude and insulting. "

>

> Worse, I'm sure the lame PFT they are planning is not going to reveal

> anything useful, because SSDI has misunderstood my report of " rapid shallow

> breathing with sweating and dizziness " which occurs when I've over-exerted

> (i.e. climbing about ten stairs too quickly).

>

> But I did see the doc for ten minutes. The thorough exam involved him

> looking at the huge lipomas all over my back, shoulders, and rear neck, and

> checking for muscle weakness (he's now probably my tenth doctor who can't

> grasp the difference between weakness and exercise intolerance). To his

> credit, he did glance over the two articles I had brought, and asked a

> couple of questions. He also looked at my printed sheet of two dozen

> symptoms that I have. When he came to peripheral neuropathy, he asked me

> about my blood sugar. I patiently explained that, yes probably 99.9% of PN

> is associated with diabetes, but not me. I don't think he believed me, but

> he sure didn't waste his time over a $1 urine test-strip or especially a

> frightfully-expensive blood glucose level. He also noticed (as I knew all

> too well, having provided the article) that, historically, about 50% of all

> cases of MSL are linked to chronic alcoholism, and asked me about my

> consumption. I told him that I have only had moderate amounts long ago, but

> I'm SURE he didn't believe that one.

>

> More fun: when I got home I called (despite being in near-crash) the SSDI

> lady to let her know about the delay. She was in unusually non-listening

> form, and vaguely accused me of causing this delay. After some discussion,

> she told me that I had last seen " my " doctor back in September, and " they "

> like it if this is more recent. This was where I lost it. :-) I told her

> that (a) the reason why September was a long time ago was because of THEIR

> delay not mine, ( there was no known treatment for my disease and MY

> doctor had expressly told me there was no need to see him for another year,

> and © she wasn't noticing that I HAD been to several neurological

> specialists more recently, which is what actually mattered. I also told her

> that my PFT was wrong-headed anyway. I had to spell it out for her that P

> stands for Pulmonary, and to my amazement she didn't know what that meant. I

> told her it meant LUNGS. This is my MEDICAL EXAMINER at SSDI!!!

>

> She then asked me how old I was. I said, 55, but I was 53 when I began this

> application. She said that " wasn't true " . After I helped her look on her

> screen for my application date, and proving that I had since then had two

> birthdays, she admitted that OK maybe I was right. She then tried to get me

> off the phone by saying that everything would be all right, and their job

> was to help me. I said (oops) that NO it wasn't, their job was to stall me

> until I died! I know, I shouldn't have said that. To her credit, she didn't

> just deny my claim immediately and hang up. Instead, she was surprisingly

> reassuring. So I really unloaded, and told her how I was just so sick and

> tired (LITERALLY) of all this, and she told me that the board was really

> good at what they did, and they would give me a fair consideration. I said,

> NO THEY WON'T, she asked how I could know that, and I said well look at this

> STUPID PFT test, which isn't going to show anything useful. Oh well. I'm

> hoping she will eventually lobby " the board " to accept my claim, so she

> doesn't have to hear from me anymore (as someone here related).

>

> THEN I called my neurological doctor, the big-shot who writes articles and

> is always in Europe delivering talks about how smart he is. Or I should say,

> I called his office. To find out why it's been two weeks since I sent them a

> release so they could send me my test results (brain MRI, blood mtDNA

> screens, and NC/EMG). Cleverly, they twice didn't even pick up, so I left a

> (NOT rude) message, about how I had also been promised that the doc would

> call me with the results. Later while I was asleep someone called back, said

> they would " send the results right away " . Ha, ha, heard that one.

>

> To quote Dave Barry, " I am not making any of this up " . If I had the energy,

> all of this would make a good boring book. :-) Sorry, but I told you this

> was a rant. Pray for me, that the next time I won't say anything even worse.

>

> Steve D.

>

> 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.

>

February 19, 2005

Steve,

First of all, don't apoligize for venting. Your anger and frustration

are very much normal and I can't imagine anyone NOT feeling like you do

if they had gone through the same thing.

Try not to stress about it (easier said than done, I know) as stress

takes a lot of precious energy. Try to use the next three weeks to rest

up and maybe think of different words to convey the way your symptoms

effect you. It sounds silly, but sometimes just re-wording something

can make the light bulb go on in another person. Assuming of course

that the bulb isn't burned out to begin with (GRIN)

Steve wrote:

>Hi all

>

>Very sorry, but this is a rant. I need to write it down, but you probably

>don't need to read it. :-)

>

>Today I got up very early, at great energy cost to me, and drove 2 hours

>round-trip, to go to my SSDI-assigned exam and PFT (Pulmonary Function

>Test). After a nearly sleepless night worrying about it all, I was wiped

>out. The doctor's office was neat but rundown, in an " other side of the

>tracks " neighborhood. I believe this doctor was chosen primarily based on

>cost. After confirming TWICE with the doctor's office and TWICE with the

>SSDI lady ( " Now don't be late, honey, do you know what I mean? " ) for an

>appointment nearly THREE MONTHS after I had last sent my SSDI info, believe

>me I was ON TIME.

>

>While I filled out the inevitable clipboard sheet, the receptionist was on

>the phone. She immediately informed me that, too bad, " they had no time for

>me " at the hospital (a seedy place, a couple of blocks down the street).

>Seems my PFT would be outsourced there, and it was my doc's policy to not

>make the PFT appointment until the patient showed up. This because " a lot of

>you people " don't even show up. So, too bad, they would have to re-schedule.

>Imagine my reaction! Because my wife will have to drive me, and she is in

>school far away, from Mon. - Wed., and I have a great deal of difficulty

>getting anywhere in the early morning, the next appointment for that PFT

>will have to be three weeks later. The receptionist told me that this would

>delay my SSDI application. I'm afraid I laughed out loud. You see, I began

>my application an incredible 17 months earlier. So what's another three

>weeks? :-) I also gave her a polite but mildly infuriated ear-full, capped

>with " I think your policy is rude and insulting. "

>

>Worse, I'm sure the lame PFT they are planning is not going to reveal

>anything useful, because SSDI has misunderstood my report of " rapid shallow

>breathing with sweating and dizziness " which occurs when I've over-exerted

>(i.e. climbing about ten stairs too quickly).

>

>But I did see the doc for ten minutes. The thorough exam involved him

>looking at the huge lipomas all over my back, shoulders, and rear neck, and

>checking for muscle weakness (he's now probably my tenth doctor who can't

>grasp the difference between weakness and exercise intolerance). To his

>credit, he did glance over the two articles I had brought, and asked a

>couple of questions. He also looked at my printed sheet of two dozen

>symptoms that I have. When he came to peripheral neuropathy, he asked me

>about my blood sugar. I patiently explained that, yes probably 99.9% of PN

>is associated with diabetes, but not me. I don't think he believed me, but

>he sure didn't waste his time over a $1 urine test-strip or especially a

>frightfully-expensive blood glucose level. He also noticed (as I knew all

>too well, having provided the article) that, historically, about 50% of all

>cases of MSL are linked to chronic alcoholism, and asked me about my

>consumption. I told him that I have only had moderate amounts long ago, but

>I'm SURE he didn't believe that one.

>

>More fun: when I got home I called (despite being in near-crash) the SSDI

>lady to let her know about the delay. She was in unusually non-listening

>form, and vaguely accused me of causing this delay. After some discussion,

>she told me that I had last seen " my " doctor back in September, and " they "

>like it if this is more recent. This was where I lost it. :-) I told her

>that (a) the reason why September was a long time ago was because of THEIR

>delay not mine, ( there was no known treatment for my disease and MY

>doctor had expressly told me there was no need to see him for another year,

>and © she wasn't noticing that I HAD been to several neurological

>specialists more recently, which is what actually mattered. I also told her

>that my PFT was wrong-headed anyway. I had to spell it out for her that P

>stands for Pulmonary, and to my amazement she didn't know what that meant. I

>told her it meant LUNGS. This is my MEDICAL EXAMINER at SSDI!!!

>

>She then asked me how old I was. I said, 55, but I was 53 when I began this

>application. She said that " wasn't true " . After I helped her look on her

>screen for my application date, and proving that I had since then had two

>birthdays, she admitted that OK maybe I was right. She then tried to get me

>off the phone by saying that everything would be all right, and their job

>was to help me. I said (oops) that NO it wasn't, their job was to stall me

>until I died! I know, I shouldn't have said that. To her credit, she didn't

>just deny my claim immediately and hang up. Instead, she was surprisingly

>reassuring. So I really unloaded, and told her how I was just so sick and

>tired (LITERALLY) of all this, and she told me that the board was really

>good at what they did, and they would give me a fair consideration. I said,

>NO THEY WON'T, she asked how I could know that, and I said well look at this

>STUPID PFT test, which isn't going to show anything useful. Oh well. I'm

>hoping she will eventually lobby " the board " to accept my claim, so she

>doesn't have to hear from me anymore (as someone here related).

>

>THEN I called my neurological doctor, the big-shot who writes articles and

>is always in Europe delivering talks about how smart he is. Or I should say,

>I called his office. To find out why it's been two weeks since I sent them a

>release so they could send me my test results (brain MRI, blood mtDNA

>screens, and NC/EMG). Cleverly, they twice didn't even pick up, so I left a

>(NOT rude) message, about how I had also been promised that the doc would

>call me with the results. Later while I was asleep someone called back, said

>they would " send the results right away " . Ha, ha, heard that one.

>

>To quote Dave Barry, " I am not making any of this up " . If I had the energy,

>all of this would make a good boring book. :-) Sorry, but I told you this

>was a rant. Pray for me, that the next time I won't say anything even worse.

>

>Steve D.

>

>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.

>

February 19, 2005