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  • Social Security REVERSED my SSDI after 3 years

    Hey out there, my disability has been reversed by Social Security. I typed this out to Donna under a different topic, but figured it might be useful here.

    THIS happened:

    When I applied for SSDI in 2010, I included some psychiatric problems that were exacerbated by the IC PAIN. PTSD, Anxiety, and dissociation. I did this because I had past hospitalizations I thought would help my case. Interstitial Cystitis and Fibromyalgia were the main diagnosis, but I think including the psychiatric problems confused them.

    After receiving benefits for 3 years, they reviewed my case. They sent me to a physical doctor and a psychologist. The physical doctor started out by saying 'oh, IC is terrible', which gave me confidence to be positive. The psychologist did standardized memory tests I'm sure I did poorly on, but I was friendly with him. I wasn't worried, but then I received this:

    "We're writing to let you know that we've made a decision on your case. After reviewing all of the information carefully, we've decided that you are now able to work. This means that your benefits will stop."

    On the back page, it said this:

    "You were found to be disabled because of PTSD Affective/Mood Disorder. Current evaluation is necessary because your condition was expected to improve."

    Then it lists my doctors, including my urologist at the top. And it says "You said you are still disabled due to Interstitial Cystitis, Fibromyalgia, Chronic Migraine, Gastritis, IBS, Chronic Fatigue Syndrome, Double vision, Memory Loss, Dissociative Identity Disorder, PTSD, Paxil Discontinuation Syndrome...

    ...The medical evidence shows that your condition has improved. Psychological exams indicate that you have the ability to understand and follow simple instructions, concentrate adequately and appropriately interact with others. Physical exams did not show a condition that would limit your ability to work. While your condition may prevent you from returning to your past work, it would permit you to do simple, low stress work."

    I am extremely lucky to be married to someone with a stable job. I went to the SS office and immediately filed an appeal. I contacted the lawyer I used before, even though he seems completely unfamiliar with my case. And now I'm just going through the process. I'm told it takes over a year, but when they approve me again I'll be paid back to where they stopped.

    Anyway, let this be a warning to everyone! My therapist says she has DOZENS of cases just like this one. My lawyer says they have been bombarded with calls from people in my situation, and DO NOT ACT NICE OR POSITIVE WHEN SEEING SS DOCTORS. Our government is broke, so they're doing what they can to recover money. I'm only 43, so that could be a factor. And I look young. But mainly we're just dealing with a flawed system.
    Exposure to an unclean hot tub 2-17-07 FIRST UTI
    (Got ringworm-like sores from it before)
    (Someone else got what looked like 'eye herpes')
    (My husband got an ear infection. We were all just sitting there!)
    SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
    TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
    Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
    CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
    MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
    PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

  • #2
    Re: Social Security REVERSED my SSDI after 3 years

    I'm sorry you're having to go through that. Where is this "simple, low stress work" they are talking about anyhow??

    Comment


    • #3
      Re: Social Security REVERSED my SSDI after 3 years

      When you have IC everything stresses you out, well in my case it does. I had to take a whole semester out of college, because I couldn't control my pain. I cant imagine what going to work is going to feel like, and I'm sorry your going through this, but I'm sure it will work out....my sister went through the same thing, but she got it resolved.

      Comment


      • #4
        Re: Social Security REVERSED my SSDI after 3 years

        I hope your lawyer can get it straightened out. I'm still working, trying to survive until I can retire. My boss and some coworkers know about the condition, so I'm lucky that they accommodate me as much as possible. I'm an engineer, so I have to field work sometimes, and that can be hard to take, but I'm in management now, so I don't go out as often. It's just embarrassing having to go all the time when in meetings. I have mostly urgency and frequency, not pain like you, so I feel for you. I just have the psychological craziness from the constant gotta-go feeling, which some days drives me insane. I've tried diet, meds, cysto/hydro, and botox.

        I don't think someone the constant pain you have can work even if the fabled "simple, low stress work" did exist. Good luck with your appeal. The judges who deny this should have to live with it for a week!

        Comment


        • #5
          Re: Social Security REVERSED my SSDI after 3 years

          I found some simple, low stress work after I'd been on SSDI for about 6 months. It's a call center called "CaptionCall", which provides phones to hard-of-hearing people with a screen that captions whomever they are talking to.

          All I have to do is speak everything I hear into a voice-recognition program. It requires NO BRAINS and very little interaction with people. I love it, and I've been able to do 15 hours a week in three 5-hour shifts, early morning before the pain starts.

          It's great! A reason to get up and shower. Something we all need.

          So, what do I do? I TELL THE SOCIAL SECURITY DOCTORS "I found a job I can do!" Shame on me for being happy my life had fallen into a routine that works, making me the exact amount of money Social Security allowed me to make ($700/mo).

          After all I'd been through with the hot tub infection (believe me, I know urgency - I think I had ringworm in my urethra for a year!) and the subsequent downward spiral into IC, Fibro, Migraines, Fatigue.. EXCUSE ME for being happy with my life again. Geez.

          Oh and they keep ACCIDENTALLY PAYING ME. They did it again last week. ***, ya know? I have to go back and give it to them because I'm not playing this game if it could possibly end with me paying it all back. Grrrrr.
          Exposure to an unclean hot tub 2-17-07 FIRST UTI
          (Got ringworm-like sores from it before)
          (Someone else got what looked like 'eye herpes')
          (My husband got an ear infection. We were all just sitting there!)
          SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
          TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
          Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
          CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
          MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
          PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

          Comment


          • #6
            Re: Social Security REVERSED my SSDI after 3 years

            I was told I will get reviewed in January of 2016. OK. I will state it seems surprising that you get knocked off of disability all of a sudden.(with what all you listed) Jeez! OK. I can know they will try to find any single reason to reject somebody. Besides, I have read and heard about the money allotted for SSD dwindling. Yikes! I have had another neck surgery since getting on SSDI. OK. I am scheduled to have back surgery next week. (as in decompressive laminectomy) Anyhow, I currently walk with a cane often. Oh! I have been told that surgery may allow me to be free of the cane.(and not need it) Of course, I was not guaranteed that.(or that I will be impressed with the surgery) OK. My neck still hurts some. I still get tired enough that I can't stay awake 8 straight hours on some days, but I am wondering if I will pass the review with flying colors or not. I am not gonna sweat it now.(nope) One dude that I used to work with ended up getting it on his first try without being in worse shape than I am. (and passed the review with flying colors) Oh, well! Yep.

            Comment


            • #7
              Re: Social Security REVERSED my SSDI after 3 years

              I'm re-instated.

              I kept hand delivering and sending in 'functional reports' from my doctors. Plus giving copies to my lawyer. And when SS paid me after I told them not to, I sent them a check. A rheumatologist and a psychiatrist did the functional reports. Then I got my urologist to write them a letter.

              For the letter, I printed out the new SS ruling on IC and highlighted what applies to me, writing dates of my treatments like the hydrodistension in the margins. Then I reminded her a couple times until she found the time to do it. Then I got it to my lawyer's office.

              The lawyer's aid said Social Security wants an 'Informal Hearing.' And I remember in the denial it talked about a "Disability Hearing Officer." Those sound like they require my participation.

              But day before yesterday there was a big fat envelope from Social Security saying they are going to re-instate my benefits. Somebody went through all the doctors notes and wrote a sort of summary.. about 10 paragraphs, some pretty confused, but good enough. I'll take it. Whew.
              Exposure to an unclean hot tub 2-17-07 FIRST UTI
              (Got ringworm-like sores from it before)
              (Someone else got what looked like 'eye herpes')
              (My husband got an ear infection. We were all just sitting there!)
              SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
              TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
              Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
              CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
              MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
              PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

              Comment


              • #8
                Re: Social Security REVERSED my SSDI after 3 years

                Originally posted by Taramc View Post
                I'm re-instated.

                I kept hand delivering and sending in 'functional reports' from my doctors. Plus giving copies to my lawyer. And when SS paid me after I told them not to, I sent them a check. A rheumatologist and a psychiatrist did the functional reports. Then I got my urologist to write them a letter.

                For the letter, I printed out the new SS ruling on IC and highlighted what applies to me, writing dates of my treatments like the hydrodistension in the margins. Then I reminded her a couple times until she found the time to do it. Then I got it to my lawyer's office.

                The lawyer's aid said Social Security wants an 'Informal Hearing.' And I remember in the denial it talked about a "Disability Hearing Officer." Those sound like they require my participation.

                But day before yesterday there was a big fat envelope from Social Security saying they are going to re-instate my benefits. Somebody went through all the doctors notes and wrote a sort of summary.. about 10 paragraphs, some pretty confused, but good enough. I'll take it. Whew.
                Wonderful!!!! Will you get a check for the months you lost?

                Donna
                Stay safe


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                Comment


                • #9
                  Re: Social Security REVERSED my SSDI after 3 years

                  Woo-Hoo! I mean, we don't have to enjoy being disabled, but people that truly are shouldn't have to get shafted and treated like losers. (or told we got better by people that don't really know) At least, I will see how I do with my review later on. They will try to find any reason to knock us off. Bummer! Yep.

                  Comment


                  • #10
                    Re: Social Security REVERSED my SSDI after 3 years

                    They'd better back pay me! To January! Or else! Calling my lawyer, now.
                    Exposure to an unclean hot tub 2-17-07 FIRST UTI
                    (Got ringworm-like sores from it before)
                    (Someone else got what looked like 'eye herpes')
                    (My husband got an ear infection. We were all just sitting there!)
                    SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
                    TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
                    Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
                    CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
                    MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
                    PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

                    Comment


                    • #11
                      Re: Social Security REVERSED my SSDI after 3 years

                      This is true because it happened to me.

                      MYTH: You can still get social security if you were on it already.
                      TRUTH: NO, you can't. Social Security does a review ever 3-7 years, and they have the right to drop you at the end of the 3 years. They also have the right to do a review every year. You can be dropped like a hot potato.

                      MYTH: Once you get social security you will stay on it forever.
                      TRUTH: This is not true. You have to prove your case on your review all over again.

                      I am so sorry this happened to you. This happened to me after 3 years as well. I came to this board for support (in another area), and someone got accusatory at me that, "I must be lying" if I got dropped. If you look back on my past posts you will find it. Glad I'm not the only one that has gone through this. I was able to get re-approved after I re-proved my case. I swear I lost a few hairs over that whole event. My review is coming up soon again and I fear I will loose it again. This whole process sucks. You have my sympathy.
                      Last edited by Trei6y1952; 07-24-2015, 12:31 PM.

                      Comment


                      • #12
                        Re: Social Security REVERSED my SSDI after 3 years

                        TWO MONTHS and STILL NO CHECK

                        Another heads up. If you opt for them to stop paying you, it takes at least 90 days for them to get back to paying you after you've won your appeal. Longest summer of my life.
                        Exposure to an unclean hot tub 2-17-07 FIRST UTI
                        (Got ringworm-like sores from it before)
                        (Someone else got what looked like 'eye herpes')
                        (My husband got an ear infection. We were all just sitting there!)
                        SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
                        TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
                        Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
                        CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
                        MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
                        PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

                        Comment

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