SSA adjudicator called today

[flowergarden]

I got a call from the adjudicator assigned to my case today. At first he said he thought I needed an SSA exam. Then when I told him about my rheumy appt. on Monday he said he probably wouldn't need the exam. He's going to get the notes. I also told him about the neuropsych testing set up for May and June. He said he hoped he wouldn't need the results of that, either.

So, I keep telling myself that it was a neutral conversation and not to read anything into it. But at least it wasn't negative-sounding. The guy did seem genuinely concerned.

Wish me luck!! :luck:

[bananawear]

Hi Sue - I just wanted to add my two cents worth on the neuro psych testing. If your test results show any form of congnitive loss, I would make sure that SSDI gets a copy of the results. For my case, this is what cinched the decision as favorable in my direcion was the impairment I had suffered as a result of my CNS lupus. It may actually end up helping you along.

Keep that in the back of your mind when the time comes.

Take good care- Chris

[raggedyann1]

Sue,

and my 2 cents is to make sure your rheumy puts in your chart everything that is going on. Explain to him that soc sec is going to ask for his chart on you. So if pain not a general pain statement but pain so bad makes daily living almost impossible or what ever is your case.

Good luck,
Karen

[flowergarden]

Chris, I mentioned to the adjudicator when the tests are scheduled and that I would make sure he got copies. So hopefully that will work out if the other doesn't. Thanks for the suggestion.

Karen, what you mentioned is a concern. This rheumy I was so happy with is turning out to cause some questions in my mind. He is well-respected and most of his patients are crazy about him, despite his being very shy. He does research.

Yet, he has said and done some things recently that make me wonder. Last month he told me flat out that I did not have seizures. This month I asked him why he didn't think I had them when the EEG came back "seizure disorder NOS" and anti-seizure meds kept the episodes at bay. He replied that I must have him mixed up with another doc, because he never said that.

I asked him what my chances of developing scleroderma were. He said nearly none, until I reminded him that I had centromere antibodies. Then he said my chances were well over 50%. The next month he didn't remember anything about my antibodies or chances of scleroderma.

I asked him if he thought I had RA, as another rheumy said he thought I had it. The current doc asked me why the other doc thought that. I replied I didn't know (partly true). So he said he's do some blood work to check. The next month I asked what the labs had shown about RA and he said he hadn't checked for it. But then he added that my joints make him think I had it.

Yet he's the doc that's treating my diseases pretty aggressively, which I like.

I did ask him to document some stuff for the SSA. But I don't think he did a very good job. I'm counting on some of the other docs to help, including my podiatrist who did the surgery on my ankle for an arthritic condition.

Frankly, now I'm counting on the neuropsych testing. I know that's going to show problems.

I met a couple really good docs at the lupus symposium a couple weeks ago. Both do research. One is head of the lupus clinic and head of the rheumatology dept at the U. of Washington Med. School. The other is head of rheumatology for the Virginia Mason clinic and does a lot of lupus research. From what I understood, the UW is getting into lupus research in a big way. I would really like to see one of the docs and go to the lupus clinic. I'm sure there is quite a wait and the drive is longer (but only by 1/2 hour).

Yet should I give up on a doc who is supposed to be so good? Or am I having so much brain fog that I'm not properly remembering things???? :blink:

[dudley]

Sue,

When I was going through the disability process I got records from every doctor. Even the ones that wre currently tresting me. Don't ask the doc. Ask the staff.

Review what each doc says. I bet you will find alot of things. Some things you did not know about and some mistakes.

ALL WAYS KEEP COPIES.

Good luck

Elaine

[flowergarden]

The adjudicator contacted me again. He said the schedule for my neuropsych testing isn't soon enough for the (first) determination. He asked if I would agree to going to my psychiatrist for the testing. He said he would set it up.

I feel very positive about this, as my psychiatrist supports me tremendously. He also said that if this doc can't schedule me, would I go to an outside doc? I said yes.

I have two questions of those who have gone through this. Do the outside docs have to have the same qualifications of having the specialized training to do the neuropsych testing? Also, if the adjudicator makes the appointment, do I still have to pay for it?

This adjudicator seems to be very nice. He seems to be trying hard to help me. :)

[bananawear]

Hi Sue- I'm not sure what you mean by an "outside" dr.?

It sounds to me this guy is trying to finagle some way to get you to be evaluated by a Social Security dr. If he is going to push up your appointment and make you see one of their docs and make the appointment at their convenience and not yours, then Social Security can pay for it. Especially if this doc is on the Social Security payroll and there is a possiblity that the report can be manipulated in Social Security's favor. As I recall- the neuropsych testing is about a $3000 test. My disabilility company paid for mine because they felt it would help my Social Security case and it did. But I went to a private dr. The person who did mine was a PHD who was specially trained in doing this testing. He did have private therapy practice but did have specific training in this type of testing as well.

Something sounds fishy to me there Sue, my radar would be on alert, I know when we are sick sometimes its hard to be alert to everything that is going on but dont let this guy talk you into something. Stick with your own docs, and dont pay for going to Social Security's docs. I would still have the tests done with my own docs anyway for my own piece of mind.

Take good care- Chris

[flowergarden]

Thanks, Chris. This is getting complicated. I have three appointments set up with a psychologist for neuropsych testing. They extend from May 20 to the end of June (because of the doc's schedule). I would have to pay 10% of this.

The SSA adjudicator called and said that he is supposed to make a decision before the end of June, and he would like to get the CE done before then. So he asked if my psychiatrist would be willing and able to do it before then, would I agree. I said yes. He asked if my doc couldn't do it, would I go for an "outside" opinion. I said yes.

(I asked the company that is representing me what to do and was told to go with SSA's suggestion.)

Last night I looked all this kind of stuff up on the SSA site. It says that they will first ask your own doc to do the CE. They will pay. Then if that doesn't work out they will pay for another doc in the area to do it. This is where I would be concerned. From what I've heard of these docs, they don't take a whole lot of time or energy. Yet the site says they must perform the same tests as would be done by a doctor paid for by the patient, and they must have the same qualifications.

What I'm trying to do is get the PhD to let me know if she has any cancellations so we can move the dates up. The other idea is for her to contact the SSA after the first session if she finds anything pertinent.

I think I'm more nervous about the timeline than about the outcome of the testing.

So you know if there is a particular time frame the adjudicator has to work in? I suppose I could look that up, too.

[bananawear]

Sue - I'm surprised they have you doing this over a period of a month. I went and did mine in two days. It does take almost two full days but then its done with. Also it doesnt make sense to me that they would give a "partial" report? I thought that the evaluation was cumulative thing but its been a really long time since I had mine done - like maybe 5 years ago. So I don't remember all of the components.

It seems to me that there are other people here on the board that have gone and had a neuropsych test done and it was a 2-3 day test as well. I would really push for that if I were you.

Let us know what you find out. I don't know anything about the adjudication timeframes at all.

Take good care- Chris

[raggedyann1]

Sue,

I can tell you that my approval took 8 months from my filing date. So my adjudicator took longer than the standard time frame which i think is 4 months from filing date. Part of it was I got new complications after my application and my social security clerk told me to keep calling him with anything new or new doctors. That and my rheumy is very slow with social security requests other than the simple file requests.

I only had to see a physical doctor to evaluate my pain. He only does workman's comp and social security and he is not known to the other pain mgmt doctors in my area. He was supposed to spend an hour evaluating me but he only spent 10 minutes and most of that time was copying down all 18 of my medications and asking me why I was taking each one. He tried to act like he knew all about scleroderma but his statement to me was wrong. His report was so riduculous, and made many statements about things he never even tested me on. I am saying all this as I would be just as suspicous of a soc sec psychiatrist doing the testing.

They get real pissed if you won't go to their doctor when you are asked. So the best is to get your testing moved up as much as possible. Beg, cry, sulk whatever you need to do to make it happen.

Let us know how things go.

Take care,
Karen

[flowergarden]

I got a letter from a "neuropsychologist" yesterday telling me I have a CE appointment June 7 for 3 1/2 hours. the psychologist I picked would have tested me for 6 hours--more if necessary.

Today I called the SSA's doc to ask if this was my first appointment or the only one. Nobody called me back.

Maybe my knotted stomach will help. Who knows?

[Pickles]

Hey

I went to one of their doctors for the physical part. He made me walk on my heels backwards, walk on my tippy toes, TRY to squat(I don't think people do a lot of these on the job!!!), he would push on my stomach, back, side, ribs and if I would say it hurts, he didn't seem to mind, he would just keep pushing. He asked lots of questions like meds and surgery questions like most doctors would ask. I didn't really like him and what I remember most is I had a small purse with a billfold, checkbook and maybe a couple of other things in it. I told him that I had trouble holding things, lifting things and he said, Well, I see you can carry a purse!!! I never heard what he told my doctor or soc security.

The "mental doctor" was something else. I was asked what the date was, who the president was, if I got along with my family, How I did in school, I was asked to remember 3 things at the beginning and at the end of the interview I was asked what the three things were, I remembered a pencil and another item(can't remember that now)but couldn't remember the third thing then. I was also given a page of words and was told to write a sentence about each word. I could not think of anything to say. I may have written 2 or 3 sentences and there was at least 25 words on the page. I was blank, I didn't know what I was supposed to do, it was like I had forgotten everything, I just sat there and couldn't think of anything to write down. Then, I saw the real doctor, before I think it was a helper. He took my picture to make sure I was the real person, he asked me what was wrong, where I had worked. I remember telling him I was depressed, tired all the time, hurt all the time, don't know what all. I never heard what he told soc security either.

Now, my hubby who went for his checkup with the mental doctor to see if his disability would be continued is another story. The doctor was the same doctor who did mine. I don't know if he thought my hubby was a sure bet or not, he did MAGIC TRICKS the whole time!!! and of course, my hubby got his disability continued. Now, S has been getting disability since 1987. He has a long history of mental problems that mental health clinic knew about. My hubby asked him if he remembered talking to me and he said "that she should get disability" but I was denied twice before I got it.

Flowergarden, Don't worry about it, its nothing you can "study for." I know you will worry about it cause its something that you have to do but just be honest and do what you can do. You have to go through with it. They told me if you cancel the appts or don't go, you will be denied. You don't have to dress up either, just dress the way you usually do, comfortably.

Let us know how it goes, Oh, almost forgot. Mine may have lasted 2 hours at the most.

[flowergarden]

Thanks, Pickles. I appreciate your reply.

I'm also debating about whether I should cancel the private testing I set up or not. The first two thirds of the private testing occur before the SSA one. The last part happens only two weeks later. Counting the intake, which I already had, it will total 7 hours. It seems to me that it will be a lot more thorough than the 3 1/2 hour SSA one. But then again the SSA may have already made a decision by the time the private one is completed.

Maybe I should call the adjudicator and ask.

I know my NP symptoms are bad. I have nightmares about the SSA forever denying me and I have to go back to work. I would last about 1 hour for 1 day before I wouldn't be able to stay upright and focused. Then I'd have a horrid flare.

I don't plan on doing anything different for the appt. I'm going to be me--in all my "glory" ;)

[bananawear]

Hi Sue - I'm wondering if the two evaluations you are referring to are even the same thing. The Phych exam that SS schedules - the one that Pickles is referring to and the one that they sent me to for your determination, is not the same thing as the Neuropsych testing that I had privately done.

We are talking about two completely differerent types of evaluations. You may want to make perfectly clear with Socal Security what they are sheduling you for. What Pickles described is a very standard Social Security Pscycolgical evaluation that they make everyone go through, the tell you it will take 2-3 hours to complete the testing but it not formal Neuropsych testing like you would get with a report to your dr. etc. that measures cognitive function, reasoning skills, memory sets, etc. I have been through both and the true neuropsych testing are timed tests that are monitored and measured. Social Security does not do anything like this- at least didn't when I went in. And keep in mind, Social Security is trying to prove that you can work- this Dr. is on their payroll so it would be to your benefit to have your own independent results as well - anything that supports your case is to your benefit.

My psych evaluation from Social Security said that I had been an inpatient in a mental hospital, which I had not EVER BEEN , it also said that I wore contact lenses and forgot to wear them the day of my appointment, which I do not wear contact lenses, and it had a couple of other mistakes in it too. My attorney had to write a letter correcting the errors in the report at my hearing.

I hate to sound cynical - but be sure you are protecting yourself and not turning all your trust over to Social Security-

Take good care-- Chris

[raggedyann1]

Flowergarden,

First let me say that I have not had to have the neuro-psychtesting or the soc sec psychological eval.

My medical "test" by the soc sec doctor was a bunch of crock. Several things he put in my report he never even tested on me. Like walking on heals and toes.
His report said I was "sickly" looking and went on to say I could stand/walk 6 hours per day and sit 6 hours per day. When I got the copy of his report ( IN california you have an option right on the form that says you will attend the testing , that you can have a copy sent to 1 doctor. I picked my GP cuz its really easy for me to get copies of things from him and he is local.

When I got that copy I was sure I was going to be denied. However my rheumy's functional evaluation got back to soc sec around the same time and I was approved.

Don't cancel your private testing and as I said before beg and cry with the doctor to finish the last part before your soc sec doctor eval. Her detailied report to them, and make sure she understands that the more detail the better for soc sec the better shape you will be in for an approval.

Hang in there,
Karen

[flowergarden]

Chris and Karen, thank you. It makes better sense now. I was confused that the doc they have lined me up with is a neuropsychologist who specializes in neuropsych testing. What you're saying is that for the SS exam, he doesn't do quite the same thing as he would for a private patient, right? Two different types of exams.

I've already asked the private psychologist to notify my of ANY cancellations she has. I will keep my appointments with her, and ask if there is any way on earth to get this done earlier. I guess she is a very popular and busy professional. Her scheduler (a friend of mine) can't believe how far out she has to schedule.

This is more stress! What with my rheumy problems, I'm about maxed out. Who knows? Maybe that will be to my benefit at the CE.

Do you think it would do any good to have my very supportive psychiatrist send notes to the SSA doc? He is convinced of the NPSLE.

Karen, I have the option of sending the SS doc's evaluation to my PCP only. I'm going to have to find out if it can be sent to the company representing me, also.

Thanks again. :flowers:

[flowergarden]

I saw my therapist today, and he answered some questions. He said that SSA does not pay badly for CE's, but not really well, either. However, the CE's are only intended to be a"thumbnail" sketch of the NP problem. They don't show a whole lot.

So, I'm keeping the private eval. and pushing her to get her report in ASAP. The company representing me says that it will probably take about a month for the SSA doc to get his report in, and another month before a decision will be made. So if I can keep on pushing the private doc, I'm hoping things will work out.

Please cross your fingers!!! :luck:

[flowergarden]

I have the first of my private eval. sessions tomorrow morning. Wish me luck. Or maybe, wish me BAD luck on the testing... :luck:

I'm really nervous. :blink:

[raggedyann1]

Flowergarden,

I will pray that the testing shows an accurate assessment about you.

Let us know how it goes. I know one of my friends here was exhausted after each session. Hers ran all day for 2 days in a row.

So allow some time to be gentle to yourself after you finish each portion of the testing.

Take care,
Karen

[bananawear]

Hi Sue - just wanted to wish you luck on your testing - I think no matter what the results, it will help your doctors to know how your brain and cognitive thinking are being affected.

Either way, this can only help with your treatment plan. Good luck and we'll be thinking of you. Get some good rest afterward and take it easy!

Hugs, and take good care- Chris

[Anisah]

Hi Sue, just wanted you to know that I'm thinking of you and hoping all goes well. :love:

hugs,
Anisah
:flowers:

[flowergarden]

I had almost 3 1/2 hours of testing, counting the MMPI (Minnesota Multiphasic Personality Inventory) I took home to do. I was exhausted halfway through the appt.

Something interesting came up. The psychologist I saw said that it will be hard to have the testing done by her and the SSA doc so close together. The tests can't be duplicated, or I will remember too much about them. Her testing will be much more thorough than his. She also says she will have the tests scored and reports written before the other doc does. So I think I'm going to call the adjudicator and tell him what she said. Maybe he'll want to cancel the "thumbnail" one.

I was feeling pretty clever about some of the definitions I gave today, until I came home and realized they were really pretty stupid. :wacko: But my spatial ability still seems to be intact. I could put puzzles and patterned blocks together in no time at all. I felt good about something! I even drove home through the unfamiliar town, taking a different route than I had before, and DIDN'T GET LOST!!!!! :)

[flowergarden]

Here's an update: the psychologist I saw for the neuropsych testing was really good, and a lot of fun. She promised the SSA adjudicator that she would be more thorough and would be quick to get the results to him. So he cancelled the appt. with the SSA doc.

Here's the part that upset me. She said I'm "high functioning" and she would have a difficult time telling him differently. The testing showed some problems with recall and with feeling on the backs of my hands (making communication with my brain a little harder, she said). She told me what she thinks my IQ is, and I almost started to cry. While I've never had it tested before, judging by my siblings and children, mine should have been at least 20 pts. higher. But I have no way of proving it.

She said she can use this as a baseline score. If this is my baseline, I don't feel "high-functioning" at all.

I guess I'll expect to be turned down. And the LTD won't last long if I can't prove to them that I have a disability other than "mental illness".

Such is life for me the last few years. :cry:

[raggedyann1]

Sue,

Remember you have only done part of the testing so far who knows what the next set will show. What does high functioning mean i wonder? I don't really understand how all the testing goes for npsle but if you ask one of the other ladies like bananawear or phantom they could fill you in on what to expect. Do you have any other internal organ involvement from your SLE? I can't remember. If you have any other organ involvement it is supposed to make getting ssdi much easier.
Also you never know what exactly she is going to write in her full report.

Do you have fibromyalgia also?? mind is foggy today. Or bad joint pain from the sle? There is a functional abilities form that your rheumy can fill out. That is what was key to my approval. Just ask your rheumy to ask you questions before he just checks off boxes and stuff. Mine asked me my input because as he said he doesn't follow me around all day. :blink:

That doesn't make you feel any easier today but I don't know what else to say.

Keep posting and let us know what happens.

Take care,
Karen

[zara]

I think my IQ could probably fluctuate 20 points or more depending upon the day you test me. ;)

Hopefully you're just getting cold feet and everything will work out in your favor. It's good to be cautious though. When do you find out for sure?

Sending good vibes your way... :goodvibes:

Sincerely,
Zara :love:

[dudley]

Sue

hi, I have never had that kind of testing. I went to new neuro 2 weeks ago and did not pass the 5 min test with flying colors as I did 1 year ago. When I had the test 1 year ago I new that my memory and cognitive stuff had failed considerable than what I used to be. I have no clue what my IQ ever was. Ihave noticed that it is getting worse. I guess that is why I did not pass with flying colors. Iam to be retested in 3 months.

I have noticed that some days are alot better than others. I do not know why. Could be all the drugs I am on or being so tired. My shrink tried to but me on speed - if you can believe that. Neither the shrink, neuro or any of the other growing number of docs I see has ever requested the testing that you are going through. Which I feel is very strange since I don't rember the doc's name all the time and have to write down ever thing- and usually lose what I write.

Somedays my brain works like it use too. Somedays my mind works OK but with a delayed reaction of hours. Other days I feel like an idiot.

I have read that you are only through part of the testing. If the same thing happens to you I would let the doc know.

I currently on Social security disability for Luspu, and sjorgens. Have alot of other autoimmune diseases that they did not even take into account. I am to be reviewed in 1 year.

I quess what I am trying to say is that it is not just based on your mind but other factors.

For the next part of your test I would advise you to be totally honest but act like you would have to being doing the test ever single day under normal conditions.
Meaning the drugs you are on - when you are in pain and when you can't sleep and if you get loopy head aches.

Best of luck

Elaine.

[flowergarden]

I just wanted to add that when my new rheumy say my neuropsych report he said it should go a long way in helping with my SSDI claim.

Do I like that or not? :blink:

I should hear from the adjudicator in the next week or two. Expect a big post either way.

[flowergarden]

I guess this is the "big" post. I had a call on my answering machine this afternoon from the company representing me to the SSA, saying they needed to discuss my appeal. Hmmmm. I haven't heard anything from the SSA yet, but I guess that means I was turned down.

I haven't been able to get hold of the person who called me yet. I won't be home, tomorrow, either.

Three docs eventually said they thought the neuropsych report in itself was enough for me to qualify. But they aren't the adjudicator, I guess.

I think I'll just go cry for a while. Nothing much else to be done. Doggone it! Today I couldn't remember where my grandchildren had gone a few minutes earlier! I'm going to have to quit babysitting, too.

I can't walk far, I can't lift, I can't hold onto things, or write well, and my brain is in pretty bad shape. Anybody want to hire me? Would you trust me with all these problems? :cry: :cry:

[Pickles]

HEY Sue,

Did your doctor ever do the FCE(Functional Capacity Evaluation)thing where she writes down how long you can walk, climb stairs, carry things, lift, squat, bend, reach, sit without needing a break, etc. I think that helped me.

Have you written congressman? I think that helped.

Is your file at the hearing office now??? You know I called when mine was there and I got a lawyer to look at it and then the judge and I got the OTR(On th Record)Decision.. Have you asked about that..Do you have a lawyer or somebody else helping you??

You may have answered these but can't remember right now. GOOD LUCK, I hope your suspicions are wrong and you were approved.

:wave:

[hurley]

((((Sue))))

I'm sorry about the mssg getting you frazzled and I hope your suspicions are wrong also. I can't remember - is this the first time you applied?

Well, I don't have any advice since I haven't been thru the process but I think Pickles made some good suggestions. How long have you been off work?

I hope this all works out for you.

Hugs.
Julie :hugbetter:

[flowergarden]

The SSA letter came in the mail late yesterday. I was denied, but they claim they didn't receive the NP test results. I had received mine by then, so I've got to see what's going on.

The SSA claims that they can't substantiate my seizures (despite an EEG that showed one). They also say that I still have the ability to do complex thinking, and that I should be able to hold a job as a teacher aide at a school. I hope when they read the NP report they will note otherwise. I'm having a hard enough time babysitting my grandchildren part-time.

I don't remember ever having an FCE. Frankly, my docs, except for the psychologists, psychiatrist, and dentist haven't been terribly helpful.

This is my first application. And I've been off work for about 13 months now.

I have borderline disability in my hands due to sensation and movement. Also lots of pain. Other joints are pretty painful. Due to varicose veins, I have stasis dermatitis and lipodermatosclerosis on one leg. I also have scar tissue in one ankle, which makes walking painful. There's the usual fatigue, malaise, etc.

Still in the dumps. :cry:

[Pat2]

Hello,

Please don't give up. Hang in there and fight until the end. They don't like to give in, but from what I hear alot of ppl get denied the first time. Please....Please......Please keep fighting. You will pull through. Good Luck hun.

((((hugs))))))

Pat

[bananawear]

Hi Sue- Please hang in there and pursue the appeal. Its very common to be denied the first time out. It seems the right hand doesnt know what the left hand is doing.

I hope this company is going to handle everything for you as to keep your stress to a minimum. They should be taking care of everything with your dr.s too.

Stay strong and hang in there-

Please take good care and be gentle with yourself now!

Hugs to you - Chris

[flowergarden]

I had an interview with the company who is filing my appeal today. The interviewer agreed with what the adjudicator said when I talked with him yesterday--what is listed in the letter I got informing me of my denial is not necessarily correct. They denied me alright, but they didn't necessarily use the info. they said when they determined it.

The SSA claimed they didn't receive the neuropsych report, but both the adjudicator and company rep. said that the statement could have been totally wrong, and the report still have been used to make the determination. In other words, the determination letter, other than the direct statement of determination, doesn't really correlate with the truth.

I asked the rep. if the SSA could be picking and choosing which documents to use in their determination, and her reply was, "We hope not". As she said, they hold the cards, though.

My next move is to go to the local SSA office and look at my file. I want to determine what is actually true. I'm wondering if it's worth writing to a Senator or Congressman about the problems with this part of the system. I makes me mad as heck that we have to play games like this!

I'll keep you updated. :flowers:

[Pickles]

Hey Sue

Get your rhemy to do the FCE:: Functional Capacity evaluation and that should help tell them that you can't do certain things...also get the doc who said you had seizures to tell them it would be a BAD idea for you to be a teacher if you are apt to have seizures.. APPEAL and maybe the 2nd go around will be the one approved. I hate that you have to keep fighting this but I was denied twice before being approved with an On The Record which I called the hearing office and got.

It wouldn't hurt you to wite the congressman at www.congress.org...

Did I email you what I wrote them? Sometimes that helps, I think it did me.

GOOD LUCK and we are hoping and praying that you'll get approved the next time.

Hugs,

[hurley]

What a mess, Sue! I'm so sorry you have to continue fighting with these morons. I simply can't believe that young, able bodied people are supported by our tax dollars and then when we put in 30 or more years working they give us such grief when we are too sick to even care for ourselves. GGGRRRRRR!!!!!

I was living next door to a young couple with 3 young children. NEITHER of them worked and they received free money, housing, food, medical, etc. for years. I finally moved because they were running a crack house on top of it. The fumes were making me and my daughter physically ill. I called the police many times and nothing was ever done.

I think the suggestions above are good ones. I would really consider getting an attorney even if you do have to pay him. With your back pay you might be able to swing it.

Hugs and love. :love:
Julie

[raggedyann1]

Sue,

Your file is not necessarily in the local office. You may have to request that it be routed there. At least in California the files go to the Fresno office.

I guess what I am saying is make sure your file is there before you go.

Karen

[flowergarden]

Thank you, Pickles, Julie, and Karen,

Karen, the adjudicator said my files would be here in town, but I like your idea of calling first to make sure. (I used to live in Fresno. :))

Pickles, you have a couple really good ideas. Thank you. As for the seizures, it's documented in my records that they only happen when I'm lying down. That probably won't help, but I'm going to send in a copy of my EEG that shows a left temporal lobe seizure myself. I might be able to get my rheumy to do an FCE, which I also need for the LTD company if I'm going to get the disability there changed from mental to physical (so it will continue.)

Julie, A friend of my mom's works at a drug rehab center. She said she's sick of seeing perfectly able-bodied people lying and getting social security. (I decided she must be talking about SSI, as lying wouldn't help anyone get SSDI. But the principle of the thing is the same.)

I feel like I lost a whole lot of respect for the SSA this last week. I know the high standards we were held to in a govt. position, and it can be done!

It's not as if so many of you weren't warning me, either!

[dudley]

Sue,

Just hang in there and keep fighting. Do write your goverment officails.

Truely the best of luck

Elaine

[peaches6540]

:flowers: sue, sorry to see you getting the SSD run around. Don't take it personal. I was unsure of what was meant by the company that represents you. Is this a legal organization or a nonprofit that reps ssd applicants? It seems like you were doing alot of work, and underinformed for an applicant whose being represented by someone

I originally applied on my own, completely naive to the fact that the goal of the Social Security was to disprove my claim, not prove my claim. I had no idea that I needed to think in terms of a defense againts their offensive to undermine my claims to be unable to do substantial work. I also had a rheum who was not supportive. Like you we disagreed on seizure report because of the lack of evidence from EEG, even tho one of my spells landed me in some type catatonic unresponsive state for 5 days that I still don't remember. I had periods of complete paralysis following some "seizures". I also had movement disorders. He was so arrogant that he would not refer me to a neurologist.

I was innitially turned downed for ssd the year i was dx, 1995, but immediately I started the appeal. during the next yr i worked temp a few mo before a flare made me quit. meanwhile awaiting my appeal, i got new rheum that had experience getting his patients ssd and insisted that i should not try to go back to work. i also delegated the process to a suggested lawyer who coordinated all paperwork. he reviewed every dr's report before they were turned in making sure they used the right language and left no loopholes for the ssd to undermine. along with more emphasis placed on my neurological deficits, the psychiatrist nailed it with a dx of depression and biploarity as a result of sle, lupus cereribritis. they called it back then. I ended up not even talking to the appeals judge at my hearing, After about 10 min of looking at my file( the size of big city yellow pages) he called my lawyer into his chambers and he immediately approved my claim. they even made my benefits retoactive two years before the actual dx based on my med records. i felt redeemed for those drs who had failed me the 2 yrs i suffered w/o proper dx.

i hope you may get some insight and encouragement from my long story. i have heard that most cases get turned down first time, but are ususually successful on appeal. so keep the faith and keep on pursuing the benefits you've already paid into for all the yrs you've worked. Its your right.

<span style='color:green'> :luck: :luck: GOOD LUCK :luck: :luck:

<span style='color:orange'>peaches</span></span>

[flowergarden]

Thanks, Peahes. Your story has helped.

I originally was awarded long-term disability, but it was based on depression rather than physical, as I couldn't quite "prove" a good enough physical disability. With a mental disability, they only have to pay me for two years unless I can get it changed to a physical one.

If it's changed to physical, they have to pay me at least until retirement time. If I can get SSDI, then they don't have to pay that part, but just the difference. So it's to their benefit that I get SSDI.

In the meantime, the LTD company hired a private company to apply for SSDI for me. Supposedly their employees are ex-SSA employees. They helped me file the first time, but never looked at what the docs. sent in. Now they have started the appeal (reconsideration) process. This company claims that they get a 50% acceptance rate on the first go round, another 15% on appeal, and another 32% in front of an ALJ--for a total of 97% success rate.

i do think that one of my problems was that while I was deliberately leaving my therapist out of the SSA's loop, they found out about him and sent him a request for documentation. He wisely didn't sent therapy notes, but just a letter describing what I have been dealing with over the last 7 1/2 years. Only he ended the letter with a comment to the effect of, "hopefully in a few years Sue will get back to gainful employment and/or graduate level education". I could have shot him!

Then the adjudicator said that he thought the letter my therapist sent was the neuropsych report. I couldn't believe it! I don't think the adjudicator paid any attention to what he was looking at. I mean, what's the difference between a short letter about emotional issues and an 8-page one with scores, statistics, and a report detailing what the examiner had seen? Duh!

But from what you are saying, it sounds like a lawyer does more and better work. He actually reviews what the docs. say and tries to get them to do better. That might be worth the money.

Thanks, Peaches! I could say, "You're a peach of a gal!", but you've probably heard that one before. ;) :flowers:

[dudley]

Hi,

You have really been through the mill. I will be getting the same thing with in a year.

I hope these lawyers are good. Have you checked them out throughly?

I was awarded permenant disablity bases on SLE, Sjorgrens, and depression. Since then I havew found out that I am to be rereviewed in 1 year. Translation the physic but the deciding factor on it.

Currently I am going through physical therapy. I have developed gait in one of my legs. Translation I fall down. It does not seem to be helping. The lupus might have gone into my central nervous system.

I have been advised by people in the know to try for vocational rehab through the state. I don't have a clue what I could do but I will try. They think I will flunk out. I hope not but I have know clue what I can do with the lupus plus other autoimmune problems. I was told If I try when I go back for review with a flunk than I will not have a problem with furture ssd reviews.

If they can find something for me to do that I can be trained in I would like that even better. I have gone from corp executive to a feeble minded idiot whose body will not listen to what my brain tells it to do (when by brain is working).

Have you look into vocational training? If not ask your lawyers about it. If you try and can't handle it - it will just make your case stronger.

It is a shame that our government puts us through this. Between the stress this is putting you through it is not helping your medical situation. I hope that you have written your govenrment offically.

Do you have any idea of the time frame that you are looking at?

Are you collecting anything through social services?


Best of luck

Elaine

[flowergarden]

Nothing more new on the SSA front, but I was able to renegotiate spousal maintenance with my ex that will allow me to remain in my house at least for a while yet. Hopefully this will last until I can get in Section 8 or subsidized housing.

Hallelujah! :jump: :jump: :jump: :jump:

[flowergarden]

I heard from my LTD company that they have been reviewing my case after 1 year, and that my docs aren't cooperating. They asked me to help get them moving. I tried hard.

Then I noticed that my check didn't come. I called and they said they put my disability on hold until the docs all reply. I've asked and asked my rheumy and nothing has been done. I am SO frustrated!!!!!

Can I do anything under HIPAA about this, does anyone know? :unsure:

[rsmurphy]

Hi! Flowergarden,
HIPAA only applies to the actual transfer of completed health records and forms, not getting the doc off his butt to fill them out so the office nurse can send them. I am a nurse and teach, so I offer what I would do in your situation: Lupus, to my knowledge now qualifies as a dx under the ADA, Americans with Disabilities Act, and since you already qualified, you are halfway there! Could you go to the office of the uncooperative dr. or call and ask to speak to the nurse in charge of the office. Appeal to her empathy and kindness, and share 3 of your most pressing worries with her, like, can't buy groceries, or pay utility bills, without the req. paperwork from your doc. Ask her if you could wait and see the dr. for just a minute between appts, and make your appeal to him. (tears at this point would now be appropriate :P ) :halo: good luck, and know that these paperwork issues are so common to healthcare, and only growing worse. sue

[raggedyann1]

sue,

My guess is that they can't do that too you but if you don't raise a stink they will get away with it. Most of the states have sued almost all of the LTD carriers in the last few years. I am thinking if you call and ask to speak to the manager your check might get sent out right away.

In the meantime do call and cry to doctors receptionist to help get that end moving. It is often the lack of doctors sending all required information that slows down the whole ssdi process.

Take care,
Karen

[hurley]

Hi Sue

:hugbetter: hugs from NM.

I am getting the same thing from the WC claim I filed. They will not accept paperwork regarding mental/emotional trauma from the therapist I am seeing because she is a SW and not a Phd in Psych. Also, I guess my pain doc hasn't sent in the paperwork yet, but I just had my follow-up eval this week.

I was told everything was fine by the WC ins co, now it's not fine. :angry:

So, I can sort of relate. I called my pain doc today and left a mssg with the gal who handles this (I think she's the right person). The tears were real. I said that WC won't release the check until doc sends paperwork.

I would call your docs office, too.

I'm sorry you are under this pressure/stress and that the process fails those of us who need the assistance so badly.

Love you, Sweetie.

Julie

[flowergarden]

Julie, it's such a helpless feeling, isn't it? Like, "Why don't these people GET it?"

My LTD company did release the check to me, finally. I just can't get them to return my calls now as to which docs finally replied.

I think my rheumy's office FINALLY sent my records to the UW for the clinical trial. That took 6 calls from the study coordinator, and 3 from me. I finally faxed the office and asked that they take care of the study, LTD, and SSDI requests.

Everything feels so out of control sometimes, doesn't it? :wacko:

[flowergarden]

I got my denial of the reconsideration today. At the bottom of the letter they said that my EEG was normal (it said "seizure disorder NOS), the doppler of my painful left leg was normal (the report actually said peripheral vein damage, which is why I'm seeing a vascular surgeon in two days), and it said I had no lab abnormalities (WHAT????). There were several other things that were obviously totally false.

I spent 2 hours in the SSA office today just to fill out a form asking to see my file. The gal there (notice I didn't say "lady") told me that since it included some "mental" stuff, I might not be able to see it. She would have to send for my records from back east, then they would have to be evaluated as to whether I could see them or not. How long do you think this is going to take, realistically? Months?

All I wanted to know was if my neuropsych report was included. My first denial letter said that it was included in the evaluation, but had not been received. style_emoticons/<#EMO_DIR#>/blink.gif I haven't figured that one out. It's going to be a very important report.

My LTD is giving me a lot of gut aches. My case worker will not return my calls. I want to know what records they have. I have until Nov. 13 to convince them to keep paying me. But if I don't know what they have, how can I do that? If I can't talk with them and they won't give me an email address, it makes it difficult. I suppose I can write, but I doubt I'll hear back unless they decide to drop me.

It's just been a really rotten day. Several other things have gone wrong, and I'm pretty upset.

If the LTD keeps me, can I hire a lawyer, since the LTD company has claim to my backpay? I can't afford to hire one privately. Or maybe the LTD co. will decide to drop me, in which case I won't be able to afford to live. And I still couldn't hire a lawyer because of the claim of the LTD.

I'm shafted. style_emoticons/<#EMO_DIR#>/crying.gif

[skynat]

<div class='quotetop'>QUOTE(bananawear @ May 1 2005, 03:45 AM) Quoted post</div><div class='quotemain'>
Hi Sue - I just wanted to add my two cents worth on the neuro psych testing. If your test results show any form of congnitive loss, I would make sure that SSDI gets a copy of the results. For my case, this is what cinched the decision as favorable in my direcion was the impairment I had suffered as a result of my CNS lupus. It may actually end up helping you along.

Keep that in the back of your mind when the time comes.

Take good care- Chris
[/b][/quote]
hello
I have a questions....... if a person has lupus does that person have to be on SSI?

[flowergarden]

SSI is Supplemental Security Income--for those with very little or no income. SSDI is Social Security Disability Insurance. You can qualify if you have worked enough and paid in enough to the system. But they make it extremely hard to get.

[hurley]

I'm so sorry, Sue.

I hope that this is a case where something was missing (like the neuropsych report). Forgive me if you've already answered this question, but you can still appeal can't you?

Have you applied for the SSI? If you were able to get the SSI maybe you could pick up some cash work typing up stuff for contractors from home or something like that to supplement the menial amt SSI pays.

I'm going to apply for SS tru my private carrier, but I'm not sure why I should waste my time.

You take care and something will come through when you least expct it.

Love ya!

Julie

[flowergarden]

Julie, thanks for your reply. I can ask for a review in front of an ALJ, but that can take years. I was never notified when the SSA received my request for a reconsideration, and trying to figure out if they received my neuropsych report was impossible. I didn't know who to contact. Nobody knew.

I don't qualify for SSI because of the maintenance I get from my ex( which doesn't even pay the rent). I have money in a retirement account with the state so I don't qualify for food stamps.

My COBRA will end in 8 months unless I can get on SSDI before that. If I do, I can keep it until Medicare kicks in.

I spent most of yesterday trying to figure out why my LTD company, who is looking for an excuse to cut me off, is not receiving ANY of the records from my docs (after 3 months of requests). Either the docs say they received nothing, or they are sure they sent a reply. The LTD co. says they have not received them. However, I did discover that the records were requested by a case worker who went on an extended leave. It may be that at least some of the records are sitting in her office. The current case worker says that can't be.

My depression has become really bad lately. I hate this feeling of being so hopeless that there is nothing that can be done--by myself or anyone--to help.

[raggedyann1]

Skynat,

Most people with lupus are able to continue working. You might get a feeling otherwise based on posts on this forum and site. However a good portion of lupus patients have their disease under control and are too busy working and leading their life to spend much time here.

As was already said getting SSDI without internal organ damage is very difficult. If you feel that working is too difficult for you talk to your rheumatologist about it. You have to have your doctors backing you or you will get no where very quickly.

Take care,
Karen

[dudley]

Hi

I am a little confused. How will you be getting medicare?

In my state you can receive food stamps if your income is low and you have less than 2000 in the bank. That was really no problem for me. I had to cash in all my IRA's just to live. If you get into a similar situation check out the tax and penalty stuff. Because mine was do to medical problems I did not have to pay a penalty.

At the time when I received SSDI I did not have major organ involment.

Good luck

Elaine

[jude mack]

Hi Sue

I am sorry this is taking so long, it sounds like you are getting the royal run around. It sounds
like you need to have a talk with some of your doctors and find out who isn't doing their job.
I sure hope this get resolved soon, I mean how much can one take. Don't give up, keep trying
and stay confident.

Good Luck
Jude
style_emoticons/<#EMO_DIR#>/flowers.gif

[flowergarden]

Hi, Elaine, I meant that if I was able to get on SSDI quickly, then I would be allowed to keep my COBRA until Medicare kicked in. But that's not going to be the case.

I've already tried to figure out what I qualify for in the way of assistance. I might be able to get into housing (when it's available) and I qualify to get into national parks for free. I have a term life insurance policy that goes along with my COBRA. It's not available to me to cash in. My retirement can't be touched for another 14 years. and the same is true for a very small investment I have through my former employer. As long as I have any money in a retirement account, in this state, I can't get food stamps.

This doesn't make sense, because it seems like it would be better to let me draw food stamps now, and not have to use them later, when I can draw retirement--which will have grown over time.

I contacted a lawyer today about my problems with my SSDI and the company ("company A") that's helping me to file. There is a big problem. My LTD company ("company B") hired company A. Company B also is assigned all my back pay, should I get it. What would the lawyer get? I would have to get the company B to release company A and let the lawyer get the back pay. I don't think that's likely to happen.

This sounds too complicated. It is.

Anyhow, the lawyer is going to think about it and get back to me tomorrow.

I wish I didn't get so stressed out by all this. My depression is getting really bad. style_emoticons/<#EMO_DIR#>/sigh.gif

[dudley]

Hi,

If you were not stressed out and depressed about this you would be insane. See if there is any way at all that you can get to the money. If so sign it over to someone that you have borrowed from so the do not count it as income.

I was in the same boat.

I hope that you will pick up private insurance until medicad kicks in. In NJ by law insurance carriers must pick you up. I stayed with the company that I had my cobra with. It is not cheap but with out it I would lose my house. I would really be better off if I was eligble for medicaid. My SSDI is to high but my meds, insurance, copays put me below poverty but they do not look at it that way

If I were you I would look into what ever it takes to get that money out and then go to social services and talk to every one and see what you can get.

What state do you live in?

Elaine