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    Lupus and Disabilty
    David Zelman, MD posted:
    SLE can be disabling but fortunately not always. While you may think that you are disabled, those that determine it may think otherwise. Commercial policies can differ from SS disability. For Social Security disability you must have documentation of your diagnosis and show severe loss of function in one or more organ systems ( can be due to treatment as well) that is present for more than 3 months and expected to last 12 months. Pain or fatigue as symptoms alone will not be enough.
    This is not easy to show. In arguable cases some may choose to get an attorney but a well written statement from your treating MD will more likely tip the balance. Since this is outside the scope of usual care your MD may charge for a report of this nature. Having your records sent however should not cost anymore than a copying charge.

    David Zelman MD
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    62 of 81 found this helpful
    K2isKsquared responded:
    Dr. Zelman,

    This is good information that we need to know, but I gotta say that if my doc had told me, let alone documented it, that I was going to feel that bad for 12 months I would have carried out my plan for ending the misery.

    Who thinks of these rules?

    Does Washington live in a freakin vaccum or what??!!!

    I wound up feeling that bad for about four - five years but I never would've made it if some doctor had forecast that for me at the starting gate.



    p.s. best pain reliever I ever took? Vioxx! Go figure.
    squirmy1963 replied to K2isKsquared's response:
    You gave us perfect info. I went thru the disability process about 5 years ago. It wasn't the Lupus itself that approved me, it was Lupus along with a Lupus blood disorder. Still I had to get a Lawyer, because the judge said the information needs to be presented in a certain way, and they wanted a third party doctor to confirm my conditions. Thanks for sharing this info.
    pariciajsmith responded:
    Trying to get SSI disability should be classified as one of the levels of hell. I did finally get it, but that was almost 3.5 years after I first applied. I hired an attorney after my first denial, and was finally approved in a hearing for my second appeal. From application date to first denial was 6 months. From that date to the hearing for my 2nd appeal of their denial was 3 more years. I was finally approved for: diagnosis of Lupus, with cardiac, lung, skin and joint involvement; plus diagnoses of depression, anxiety, asthma, HTN (hypertension), left ventricular hypertrophy (cardiomyopathy), hypothyroidism, peripheral neuropathy including carpal tunnel to both hands, yadda, yadda, yadda. According to the standard for being approved for SSDI for Lupus, pain and fatigue can be used to determine disability, IF they have been routinely documented by your physicians. Since most Lupus patients also have multiple concurrent medical problems, make sure you include ALL of your current diagnoses in your application.

    One of the most frustrating parts of the whole process was that my multiple physicians were completely unwilling to help in any way. All I and my attorney asked for was a simple letter stating my diagnoses and prognosis for improvement, not even a complete report. They ALL refused, which included my primary care physician, rheumatologist, cardiologist and psychiatrist. I offered to pay an extra fee (whatever amount they chose), but no go. My PCP and rheumatologist said that assisting with disability claims, and even writing a letter, was "against office policy". My cardiologist simply said "no". My counselor, speaking for her and the psychiatrist, told me very condescendingly that "we don't involve ourselves in our patient's legal problems." The office manager handed me a letter after I paid my bill that day that stated that if I again asked for their assistance with the disability process, that they would fire me as a patient. Nice, huh? Needless to say, I fired them that day. I wanted to tell them all to kiss my $%.

    I finally contacted Senator Shelby via email and regular mail, requesting assistance with the disability process. He was once good friends with my father. (If Dad had still been alive, I'd have had him call Shelby personally.) He and his wife particiapate in Lupus advocacy. I don't know if it helped, but the hearing was the next month, and I was finally approved.

    The most important factors to being approved for SSDI include: keep trying, despite denials; hire an attorney; and make sure ALL of your diagnoses are documented in your medical records.
    David Zelman, MD replied to pariciajsmith's response:
    sounds like a rough experience. Some physicians consider it a conflict of interest to offer an opinion on disability (as the treating physician) particularly if their opinion differs from your view on the subject and might damage the MD patient relationship. It is surprising though that none of the physicians would do this despite your offer of an additional fee for the report.
    David Zelman MD
    squirmy1963 replied to pariciajsmith's response:
    My lawyer lost a very good letter my Rheumy prepared for my hearing. I remember the third party doctor saying "It is a shame we don't have a letter from your doctor" I could only give an evil eye to my Lawyer, as I was to not interrupt the doc. But he had confirmed the Lupus and the blood disorders, and the judge made a bench decision, right then and there, because I met the criteria as listed in their book of qualifying disabilities. In those cases, that meet the criteria, you will be sure to get approved.

    It gets more complicated if you don't have any organ damage...I didn't use depression, but that and some of the other things that go along with the disease might tip the scales in the Lupies favor. But since it doesn't meet the criteria they require, it's very important that the third party unbiased doctor recommends disability. The judge takes that doctors advice usually, I was told. You will have no control over what this doctor says, you won't know until the hearing.
    HG1948 replied to pariciajsmith's response:

    I'd not been on any companies sponsored disability program. I was self employed. I became to ill to work any longer the very year I incorporated my Medical Case Managemnt Agency. I been awarded a state contract to help little children and their parents who were medically fragile, mediclally unstable and who had multipal medical problems gain access to the medical care they needed.

    My experience with applying for SSD was also hellish. However, I was eventually approved following an appeal hearing. It took two years from beginning to end.

    I wasn't diagnosed with lupus at that time, but I'd had several physically disabling conditions that had prevented my continuing to work. According to the SSD's own criteria, I'd been unable to "engage in meaningful employment" for the previous 6 months prior to my applying for SSD, and I was expected to remain unable to work for at least one year".

    It all seemed surreal. The Social Security Administrations' very own doctor, to whom they sent me, after examining me and ordering his own testing, actually concluded in his report that "....She is unable to engage in any meaningful employment". Nevertheless, my inital claim was still denied.

    After my denial, I located a attorney who specialized in Social Security Disability claims. I located him off the web site.

    He told me that my state was one of the most difficult in which to be approved for Social Security Disability. He told me that I had a real "fight" ahead of me, and wondered if I could medically manage the work ahead of us. I had do it because I'd lose my all of my "wage credits" if I waited, and reapplied later.( I talked with my internal medicine doctor about my plans, and he further discouraged me. He told me that he'd never had a patient approved for SSD, but he agreed to help me anyway that he could.

    Here are the steps my attorney instructed to follow:

    2. Documentation that I was unable to work included: letters from all of my physician's and treatment providers (physical therapist); a functional assessment of how my physical capabilities and limitations affected daily life both at home and in the outside world; affadvits from family, friends, and former co-workers were supplied comparing and contrasting what I could do in the past with what I could do in the present; current lab reports, current X-ray, Untrasound, or MRI or other imaging studies and assessments with attached reports; copies of hospital and E.R admission and discharge summaries, etc... I gathered all of this material by myself and faxed it to my attorney as I acquired it. It took months.

    3. I attended my hearing before a State Administrative Court Judge along with my attorney. I answered questions only when the judge, or my attorney addressed me. I volunteered "no" information. A representative from my state's Rehabilitation Training for Work, was also present. The judge asked the Rehabilitation Specialist about my ability to be retrained for some kind of part-time or full-time work. She said that she had nothing to offer me.

    Of course I understood intellectually that my life as I'd known it was gone, but since I didn't have the prospects for a new one yet. I broke down and started sobbing.

    Just before he dismissed the hearing the judge asked me "..What do you want to add?" Seeing my emotional state, I'm surprised my attorned nodded to me to speak. I said "..I spent over 19 years in school preparing for my career, and I spent 20 years in practice...You can't seriously believe that I did all of that to end up on Social Security Disability, do you?"

    I received a letter in the mail telling my appeal was approved. I paid my attorney out of my cash award for back payments.

    HG1948 replied to HG1948's response:
    I forgot to include that 6 months after that hearing, I was diagnosed with lupus. All of my disabling conditions were related the lupus in one form or another over the years.....

    I honestly don't think that informaiton would have helped me though. I received a request from the Social Security Admin. last year wanting an "UpDate" from me. I had to supply the dates of all of my doctor's visits, and the during the previous 12-18 months.

    They wanted a current list of my medications. Wanted to know if I had physician's visits for medication management. Finally, they wanted to know if my doctor and I had talked about my returning to work now or in the future.

    I called my Soc. Security Disability appeal attorney. ( I didn't understand why they needed this info. becuase Medicare claims were filed for all of my physician's visits, labs, mri's, medications, etc.????) Anyway, he told me this kind of "follow-up" occurs about 5-6 years after you've been on SSD.

    It might not have mattered, but I was greatful that I got to include my lupus data into my SSD records.

    My attorney told me that because of my age, I'm 61 this year and my current level of debility, he expected the Social Security Admin. to leave me alone, because I'm too close to 65. He still advised me to be cautious, because the fight to get what I received was hard won, and I didn't want to repeat it again!

    He added "...What, they really want to do is to re-examine claims they awarded to younger people, who might be able to re-enter the labor force again".

    marilynk2 responded:
    I have to say I was very lucky as my chronic illness counselor knows of a very good lawyer who the judges know ONLY goes with well documented cases. I had to have an outside doctor approve my disability for my school before being approved for a disability leave from my teaching job first. My PCP's letter was very instrumental throughoutout the entire two step procedure.This other doctor's letter saying I could no longer perform my job as a teacher was also key. First I was approved for my school's disability and then I started SSDI. My doc never would have even considered charging for helping me through such a difficult time! He was beside me all the way and comforting me! Even my school was behind me as they knew when I had reached the end. They tenured me knowing I was sick because they loved my teaching!

    I applied April 6, and of course was denied, and my lawyer called me in October to tell me that he went before the judge and I was approved on my son's birthday, October 14th! All in the same year. But, I was lucky to have this particular lawyer who is so well respected by the judges and he prepared me well. In the judges rulings, he stated my PCP's name as his records being critical in his decision. I believe finding the right lawyer is key. Knowing their track record and interviewing them first may be worth the effort as all all bound by the same percentage that they receive. The longer your case is outstanding, the more cut they get from your back pay!

    I have lost my wonderful doc as he has moved to the Atlanta area and I do so miss him. He really cares for his patients and advocates for them. I was once in the office waiting for a triplicate script and he saw me as he was leaving and gave me a funny look. I asked if he had filled out my script for Klonopin and he said he never got the message. (I had called the previous day and was stopping by on my way home from another appointment.)He looked at the receptionist and told her to get me taken care of right away! he knew it wasn't easy for me to sit long in the waiting room chairs as they really hurt my back!

    I don't take for granted the easy time I had as I don't know where I would have been as a single Mom trying to raise my daughters. My ex would not have had any sympathy. He has not in any of the time I have been sick even though his Mom lived a long time with Parkinson's. it is his children who have had to cope with their Mom going from Super Mom (because of his lack of parenthood) to not being able to do much and they were scared. He just continued to blame me for things and it worked!

    LitLupy replied to David Zelman, MD's response:
    It took me 2 yrs to get approved (after 1 appeal) and three days before being evicted and homeless I was approved, which stayed everything thank God.
    skitube responded:
    Today I was fired due to my attendance issues even though I had doctors notes for all the times off. I have not income and now no insurance, and to top it all off my lupus is flaring right now. HELP!!!
    lupylisa44 replied to skitube's response:
    Getting disability is VERY difficult and it has become even more difficult recently. Odds are you will be summarily denied the first time no matter what. But you might want oa apply anyway. so, the second time you apply, there will be a a record of it. It is a long arduous process, so you mght want to start now. Call your local social security office or go online to get all the forms you need.


    Did you have insurance at your job? Can you get COBRA benefits? If not you can probably qualify for some sort of Medicaid if you need to see a doctor.

    Good Luck

    Cline1974 replied to lupylisa44's response:
    Guess I was lucky with this one. However, it was not the lupus that got my SSN it was degenrative joint diease and a scan of what is left of my back (50%). However both are very painful. In a way I am happy I have lupus because the fatigue allows me to sleep for hours. Nevertheless, I have to wake up to pain, stiffness and the fact the sun is up. Sooo, I go around pulling the blinds which cause me to be fatigued once again. This with the help of my painmeds puts me right back to sleep.
    rosehurts replied to David Zelman, MD's response:
    Hello, Dr. Zelman! I am new to this community. In 1993 my PCP diagnosed me with "silicone induced lupus" silicone breast implants leaked into my lymph glands and ruined my health. I have had some HERO doctors and some COWARDS. Because I was involved in a law suit against the implant manufacturers and three surgeons, if a doctor (specialist) saw lawyer papers in my file, they dropped me like a hot potatoe! Fortunately, many of my doctors (over 60 so far) are caring physicians and willing to help me at all times. I got my Disability approved, but not for my diagnosis...for Somataform disorder. In other words, the judge believed it was all in my little crazy head. But, I took it. My working diagnosis now is Inflamatory connective tissue disorder, depression (of course), my bladder is 80% not working, progressive spinal cord problems, my esophagus is in bad shape, etc, etc.

    lupylisa44 replied to rosehurts's response:
    Hi Rose!

    This post you reponded to is very old. Please post this as a new discussion so it does not get overlooked.


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