disability determination medical exam QUESTIONS! need help!

February 19, 2008

" There is a site you can go to that is very informative for those dealing with

SSD or private Ins. disability claims. It is called:

Disinissues <about:blank>. You have to go to . Search

for this group, then ask to join. "

I highly suggest you go to this site and ask your questions there.

Torrey

Vice President

The Lanford Foundation-Lifelyme, Inc.

www.lifelyme.org<http://www.lifelyme.org/>

[ ] disability determination medical exam QUESTIONS! need

help!

hey everyone!

sorry i have been a not so great pen pal lately. you know how it is...

THIS IS REGARDING APPLYING FOR DISABILITY AND HAVING TO GET A MEDICAL

EXAM, etc. i applied with fibromyalgia, endometriosis and hypertonic

pelvic floor dysfuction. i also have lyme disease and babesia and they

are my main issue, but i am scared to add them as i have heard that i

have a better chance without them...?. please disregard this message

if you are not interested....it won't hurt my feelings! i need advice

and help with going to see the doc that the hire to help them deny my

case... please HELP if you can!

anyway, i am writing you all to ask if anyone has first hand

experience or any advice that they could PLEASE give me. i am kinda

freaking out, in a quiet way... i am disabled, have been for about 2

years straight now(have been pretty sick in the past on and off too,

but always got back to work eventually...). finally filed for

disability about 7 months ago after realizing that i paid into an

insurance policy for myself and that i was entitled to these monies

that i now needed since i am disabled. i may only be 25, but since i

was 14, i worked at least 2 jobs most of the time and paid my taxes!

in other words, i deserved it and needed to realize that.

of course, i hope and plan to get better and work again. i really love

working actually. not working for me is kinda tortuous. disability

does not like the idea that you are sick now and MAY one day get

better. they want you to stay sick for at least 1 year or die in the

end. so i guess that is the first thing i am curious about.

how do i express that of course i want to get better and improve, but

do it without screwing over my right to file because i am disabled?

how the heck will i know if in 1 year if i will be well enough to

work? when i have been sick in the past it has been for anywhere from

6 months to 3 years at a time... i should have filed for disablility

way before i did already because i just kept thinking i would be back

at work soon, but then i realized i needed to get REAL!

i got a letter the other day for a medical exam coming up with someone

for my disablility determination as they needed " additional info " . i

assumed i would get one of these sometime soon...by the way, the

doctor they chose makes his money from examining employees of large

companies like vlasic and amtrak and protects the bottom line of the

companies by deciding in his ultimate wisdom who is and isn't really

disabled. he also does disability exams for social security. this is

all he does is these types of exams. i do realize that there are

people out there trying to take advantage of the disablity system and

he probably gets them too which is good, just sucks that we all are

punished...

i knew that they were going to give me a doc who will probably try to

make things more difficult for me since he is being paid by the other

guys, but i didn't expect the guy to be an officianado of disability

exams! wow-e!

the paper says i am going for a " bone and back exam " which i find a

bit confusing as i applied for disability listing endometriosis,

fibromyalgia, and hypertonic pelvic floor dysfunction. i put the stuff

that is easier to show and can be proven on paper. i was instucted by

the people at SSD to not include CFS as apparently they consider that

a mental condition and that would automatically mean a longer wait for

a decision(SS is way behing on medicine as they do not realize CFS was

defined as a real physical disease a couple of years ago...).

since i applied, i have had a few seizures which have screwed my brain

up a little more and i also have been diagnosed with babesia and lyme.

i think that most of the illness i have had all stems from these

" tick " diseases that i suspect i have had for a lonnnggg time. i'm

just glad to finally have a doc who knows how and is willing to help

me and i now have some kind of proof-not like my insurance company

cares much about that and from what i hear disability is bad with lyme

and other TBD's(tick borne diseases) too.

anyway, i am scared to go to a new doc even just because my history is

so long and complicated and it is very draining and emotional for me

to go over it all. my lyme neurologist that i started seeing about 3

months ago took 5 hours on each of the 1st 2 appt.'s i had with him

just to try to get my history to give you an idea of the length.

i have been to so many docs in my day trying to find help and i have

cried in many of their offices or after leaving because it is so

emotional for me to talk about all the old hurt that i have from the

past docs treating me like i was a liar or acting like i was

overreacting or overexagerating... i am now soooo sensitive about this

sort of thing an i think many of you can relate!

anywho-the only thing i can think of why i would need this " bone and

back exam " is because they had sent me that loaded question 10 page

questionairre to assess my work capabilities and i wrote that i have

great difficulty often with writing, typing, anything with hands,

feet, etc and other joints-including the big one-the back because i

have major joint pain of varying degrees.

here's the thing, and the lymies out there prob know what i mean about

" traveling joint pain " because it will be one thing one week and

another the next. i could be in excrutiating pain from just a couple

of my finger joints OR they may not bother me at all one day. also i

am pretty flexible, which seems to give docs the idea that i am free

of pain. those of you with fibro may have heard the term loosey-goosey

syndrome... fibro can cause ligamant laxity and then you can become

overly flexible.

also, when they poke and prod you(if they touch you even that is...),

they are looking for your pain response. i have lived in severe

chronic pain for so long that i can usually go without scowling, etc

when something hurts just cuz i am used to it and in the past i think

i just kind of adjusted, especially because people will stop touching

you completely if they know that everything hurts!

i don't like to even have to think about these things, but what do i

have to do? do i make sure to vocalize all aches and pains that he

creates? i don't want to seem fake, but i usually wait to cry after i

leave, not in the office(if i can!). there are so many stigmas out

there with docs and especially with dealing with a doc and the

diseases that i have been dx'd with because they may believe some

crazy stuff that isn't even true about the disease and YOU.

also, i was told to bring all my meds. i understand that they can

create problems sometimes because they can say that the side effects

of the med are keeping you from working(and you may not even get the

side effect...)!

i have heard that sometimes you can have your own doc do the exam and

stragely i do have a lyme doc appt that day, which i do not want to

cancel. do i take the chance and ask them if i can just use my own

doc? do i need to see a DO like they were having me see? could i have

my physical therapist or my chiro do it? or how bout my primary who

has a sub specialty to sports med who i have known for 8 years do it?

he def knows me the best!

also, i had a brain scan that shows a reduction of blood flow in the

front and signs of possible encephylitis, lyme, or lupus. this is my

only solid proof of the lyme for the insurance co. because of CDC's

stringent and ridiculous guidelines. anyway, if i use it i am

concerned that they could try to turn my case into a mental health one

which takes longer they said. they may already do this as i was clear

about my mental deficincies in my 10 page work anylasis i did for them.

my lyme doc said at the one appt. i should add babesia to my

disablility claim, but said not to at the next appt. i will have to

call there tomorrow if i remember to see if i can get her to help aid

in this decision/process!

anyway, sorry to throw all this out there at you guys, but ever since

i got real sick and now since the seizures, i just don't seem to be

able to make decisions. i can't even seem to be able to pick off of a

menu...!

please, any comments, thoughts, advice, etc. please give!

thanks a zillion katrillion! this means the world to me to have you

guys here. i feel so alone sometimes, and i think of my online buddies

to get me out of some of my lowest moments sometimes!

oh, and other than the above mentioned physical/mental problems, i

primarily deal with fatigue and chronic pain so debilitating that i

shower about 1x a week and cannot do any normal household chores or

anything usually. i am almost always so tired that i can't even get

out of bed much.

-jen

ps-please email me offlist if you prefer at

jenniferlande@...<mailto:jenniferlande@...>

February 19, 2008

I had a lot of physical problems associated with my Lyme, Erlichia and Babesia

infections. When I applied for state assistance, the employee told me I should

apply for disability. She told me that they always deny everyone the first

time, but that I should reapply a second time. She said the second application

would take 1 year to be approved.

So, I applied, but I didn't really think I would ever get the disability and

certainly didn't count on it. I completed the application myslef, as difficult

as it was with my cognitive dysfunction, and I hand wrote the application. I

don't think the application should be typed. Lyme disease caused me to lose my

ability to write neatly. I have seen before treatment and after treatment

writing samples of syphilis patients and there is a big difference. I have seen

my own handwriting improve somewhat over the past 3 years. When I was really

really sick, I did not have the patience to form my letters neatly and I

actually just couldn't write as nicely as I had in the past. Also, I moved into

a house just before I became too ill to work anymore and I hung all the pictures

around the house. I had always been really good at eyeing the middle of the

wall. Later when I looked at the pictures, I noticed that every one of them was

off center. Every single one of them.

I did not retain an attorney. My Lyme doc then completed the physician

disability form. My SS case worker obtained all my records from all my docs,

the Lyme docs and the other docs who said I did not have Lyme. She told me she

had a sister who suffered with Fibromyalgia and she understood the problems

associated with it. She told me it wasn't her decision, however, it was the SS

medical docs who conduct the review and make the decision to grant or deny

disability.

She scheduled me for a neuropsychiatric exam with a psychiatrist who performs

these for SS. This was paid for by SS. The day of the exam I Lyme-mistakenly

set my clock for 6 p.m. instead of 6 a.m. I missed the big appointment!

Imagine my chagrin when I realized that I had blown my appt for disability! I

called my case worker and told her what I did and said, " Welcome to the world of

Lyme disease! " She asked me if I could make it to an appt that afternoon if she

was able to schedule it. I said " Of course I will. " She wasn't able to

reschedule it for that day but a couple of days later, so I did make it to the

rescheduled appt.

It lasted about 2 hours. It was very difficult for me. I had to do a lot of

different te4sts, but I can only remember two of them now. He gave me words

that had no association between them that were typed in a book with pictures.

For example:

truck monkey

window apple

plate calculator

There were a whole list of these words with corresponding pictures of the

items. He let me read over them a couple of times and then closed the book. he

would say, " Truck. " i was supposed to provide him with the word that was next

to the word truck. Needless to say, I couldn't do it.

I also had to study pictures of a family having a picnic. The picture was

divided into quadrants. After he allowed me to study the picture for a while,

he asked me questions like, " Which quadrant was the father in? " " Who was

handing the pie to the little boy? " Stuff like that. By this time I started

crying, because I couldn't remember much of anything. I had always been as

sharp as a tack. I could recite a conversation I had with someone 20 years ago.

This 2-hour exam was a slap in the face to me, because it demonstrated not only

to the examiner but to me also, how compromised my cognitive functions were.

After the exam, the doctor told me, " Off the record, I think you may benefit

by going to rehab for stroke patients. This might help you regain some of your

function. "

He explained that the exam was being performed to determine whether I could

follow instructions and carry them out, which would show whether I would be able

to work a 40-hour a week job. that is the purpose of the exam. To determine

whether one is able to function adequately at a job for 40 hours a week.

I was granted disability after that. I was never denied. I never had to

apply a second time. I have spoken to many people and met people who have

really severe physical limitations and injuries and they have been denied twice.

I don't understand why these people cannot get disability. I can only guess.

Perhaps it is because some who have problems walking can get a wheelchair and

get a sitting job on the phone or doing something like that. The only

explanation I have for receiving disability the first time around is that I was

sorely compromised cognitively and would not have been able to understand my

boss, follow instructions and carry them out adequately.

I hope that something in my experience is helpful to you during your

application process.

Tina

~~ <mary.mmschmidt@...> wrote:

Unfortunately, you are going to have to fight for this disability. My

son was very severe and did not qualify.... If you can add depression to it and

give evidence from a doctor as to the depression and the debilitation it will

help you immensely...

Luv,

LLRN

[ ] disability determination medical exam QUESTIONS! need help!