Guest guest Posted May 29, 2007 Report Share Posted May 29, 2007 HiI represented people for Social Security for 15 years before I had to retire with nuerosarcoidosis. Most cases are paid at the hearing level. It is a non-aversarial hearing. The judge will want to know how your symptoms keep you from working. A good representative will prep you for the hearing and it should go very smoothly. If you let me know what city you are in I can give you an idea of whether or not it is a liberal or conservative hearing office. Most offices are far behind. It is also important to keep your medical records up to date with your representative. I hope this helps. I won my socially Security at the application level but most cases aren't paid at that level.Take care and best of luck.stopsarcoidosis wrote: I have not been able to work since April 2006 due to the horrible symptoms I have and have been filing for disability since then. I hired a representative after the first denial to help with appeals. I just received my second denial today. The firm handling appeals said the next step is a hearing and they are about 12-14 months behind. Has anyone gone through a hearing? I know it's probably a long time away but what should I expect to happen next? This is so frustrating. I'm trying to stay positive and thinking maybe this will give the doctors more time to gather more needed evidence. How do you all get through this process? Thanks! Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2007 Report Share Posted May 29, 2007 The firm has been handling SSD cases for 30+ years. They seem pretty good. I talk to them almost weekly or whenever I go to the doc's whichever. They had never really heard of sarcoidosis before I came along. They have been researching and learning about it though. I am in Ocala, Florida. They said Tampa and ville areas are over 2 years behind. Wow! There really needs to be some changes in the social security disability process. Take care. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 Hi Jody, One of the most important things that needs to be presented is what you can NO LONGER DO. Get letters from friends, ex-coworkers, family that state what changes have come about from you being sick. If you need help dressing, shopping, paying bills, doing housework, and taking care of yourself or family-- then make sure you state this. Put it in writing for your MD's and for your attorney. Get these letters that friends write to the attorney. If you haven't had Neuropsych testing-- and have memory problems, problem solving skills being lost, co-ordination impairments, these all show up on NPsych tests. each part of the test requires a different part of the brain to complete, so if the sarc is effecting your brain- this will tell. Make sure you have the MD's explain whatever deficits they find-- if you have muscle weakness, EMG and nerve conduction studies will show this, if you have lung involvement, PFT's- Pulm Function tests, CT's with and without contrast may show granulomas in your lungs. ACE and CRP tests will show systemic inflammation-- although it is not necessarily specific to sarc. (Good indicator tho.) ESR (Sed rate) will show if arthritis is present- again an inflammation detector. The fatigue and exhaustion is one of the biggest factors for disability. If you find that you get your shower and then need a 3 hr nap to recover-- make sure you tell your MD's. Make sure that they include this in their notes. Once you get to the stage of going to trial, there is a very good chance that the judge will look at the records and approve it without you having to go in. It is about what you can NO LONGER DO that is important. One thing that worked for me was that my MD's explained that my systemic sarcoidosis, which was proven by lung bronchoscopy, spinal stenosis, fibromyalgia, chronic fatigue, and neuropsych testing that showed that the Frontal lobe, where all the Executive functions - problem solving, shortterm memory, personality, sexuality, etc-- come into play-- was impaired, even tho scans did not show disease activity. (For me it was and is a vasculitis- inflammed blood vessels- that effect my brain.) Vasculitis sometimes shows up on PET scans-- but not always. My MD's compared systemic sarc to Pulm Fibrosis, Dementia, RA and MS- along with peripheral and small nerve fibre neuropathy (showed up on EMGs) that sealed my disability. Many states still don't recognize sarc as a disability, but when they connect the look-alike diseases, they can't deny us-- at least not forever. No matter what happens-- keep appealing, as long as you don't drop the ball- if by long shot that you would be denied again= and I don't think that will happen) they have to pay you retro-actively. so don't drop the ball! Hang in there- and know you're not alone! Tracie NS Co-owner/moderator************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 Thank you so much for sharing your insights. I know you are new to the group, and I'm sure sorry you had to find us. We're all in this together, and with the knowledge each of us brings from our own personal journey- we are a strong bunch of individuals. Thank you, Tracie NS Co-owner/moderator************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 Jodi, Order the brochure that FSR has-- it is great to take with you to the MD's, the attorney's and court. You can order several copies-- one is free. Tracie NS Co-owner/moderator************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 my neuropsyche was the clincher on my case. The down side is I have a payee that makes me pay my bills before my ebay addiction. LOL The things we lose because of this damn disease, bills first-- who the hell thought of that idea.... ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 I think my neuropsyche was the clincher on my case. The down side is I have a payee that makes me pay my bills before my ebay addiction. LOLgrannylunatic@... Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 Thank you so much for your help! I think I'm gonna start a scrapbook of articles, letters, my records and my journals to take to doctors and to have for social security. Quote Link to comment Share on other sites More sharing options...
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