Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Carolyn, I have had RAI and my TED is severe. I have applied for disability because of the double vision. I can't drive and haven't worked for 2 years. I was denied, then filed for reconsideration and denied again. (They say my vision is normal...wish they could live a day with my vision and see how normal it is. It is like seeing the world with a 6 pack under your belt!) I have a lawyer now and we are filing for a hearing. I know this is standard procedure, but it sure is a pain in the butt. I have been told that Graves qualifies for SSD, but don't actually know anyone who has gotten it for GD. God bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 There have been some discussion of applying for disability on Mediboard.com. I've also read that Graves' is definitely considered a cause of disability. However, applying is difficult and it sounds like they reject everyone at least once. (Someone in our group recently described being rejected despite double vision and serious TED.) There are also state agencies that can help you apply. Best wishes B. nal Message ----- From: arkansasangel5 To: graves_support Sent: Friday, November 14, 2003 10:37 PM Subject: Social Security I was wondering-I know millions of people have Graves.Does any of you know anyone who has got disability because of the Graves.This is a possibliity that I don't want to have to face. Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 , In 1991 my husband died, I was working for lawyers, and I came down with Graves. The attorney-employers had absolutely no sympathy, their attitude was, take a pill. I know that Graves is now listed as a disability. I know no one who has qualified. By 1993 I had stopped working, I did not pursue a disability in view of the overall attitude at that time. I made it to 1995 when I qualified for widows stipend from SS. I never did ask for disability from my employer nor from SS. I suspect some of that was because those with Graves do not have the stamina to put up with the misery of pursuing a claim. I am now on my own SS and learning to adjust to being poor. I would be FAR better off had I obtained disability from my employer supplemented by SS disability. It didn't happen nor was there any attempt to assist me or encourage me to obtain such relief. It is one of the associated financial problems of this disease. Without that relief many of us will not have medical insurance because we are too young for Medicare. I spent my entire savings staying privately insured until I reached Medicare and now have it. I have not enjoyed prescription coverage since leaving work in 1993. There can be terrific financial loss to those among us. Try to contain damage as much as possible. Good luck to you with your claim! Elaine No one ever went broke underestimating the taste of the American public. --Mencken Hello LISAREYNOLDS64 On Saturday, November 15, 2003, you wrote Lac> Carolyn, Lac> I have had RAI and my TED is severe. I have Lac> applied for disability because Lac> of the double vision. I can't drive and haven't Lac> worked for 2 years. I was Lac> denied, then filed for reconsideration and denied Lac> again. (They say my vision is Lac> normal...wish they could live a day with my Lac> vision and see how normal it is. Lac> It is like seeing the world with a 6 pack under Lac> your belt!) I have a lawyer Lac> now and we are filing for a hearing. I know this Lac> is standard procedure, but it Lac> sure is a pain in the butt. Lac> I have been told that Graves qualifies for SSD, but don't actually know Lac> anyone who has gotten it for GD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Carolyn, sorry you're having such a tough time! If your levels are low, I assume Ft4 and Ft3 are what you're talking about, it's logical that you are hypO and gaining weight and having a hard time functioning! Terry > > Reply-To: graves_support > Date: Sat, 15 Nov 2003 14:34:07 -0800 (PST) > To: graves_support > Subject: Re: Social Security > > I have noticed that my stress is back and I am gaining wieght again.Yet-my > levels are still low-so maybe I am not doing right Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2003 Report Share Posted November 16, 2003 Hi Carolyn, I received disability for Graves in January, 2003, it took me 5 years. I originally applied in Oct of 1998 because I received a diagnosis of Multiple Sclerosis. I was 33 at the time and had been dealing with " unexplained " symptoms since my early 20's, and a few tests pointed to that. I was denied, I appealed, and was denied again. By the time my next appeal was due, I was diagnosed with Graves, that was in Feb of 99, 4 mos after the MS diagnosis. I was denied yet again, and gave up. Their explanation was that they did not feel I had MS, just Graves and that once it was " taken care of " with RAI I would be fine. I had RAI in April of 99 but unfortuntely I was not " fine " I decided to apply again in 2001 because I was not getting any better. I was denied again, I appealed, and was finally granted a hearing in January of 2003 and it was a fully favorable decision by the judge. By that time, because MS has a lot of characteristics of Graves my diagnosis was lowered to a " possible " instead of a definite by my neurologist which she submitted to the disability office. So, Graves disease was the only health issue they looked at. This is what I experienced over the course of 4 years before getting disability. Three months after RAI I went into hypo, my doctors could not get me into normal range for well over a year, so that caused a lot of problems especially with my muscles and fatigue, severe depression, mental confusion and so forth. Let me point out too that my TSH level was 416.99. But I did not stay in normal range long once i got there. For the next four years my levels were never stable, and I mean they went from one extreme to the next within weeks. I developed severe TED, with the double vision, and two heart valve problems. The disability office has their own doctor at the hearing, and what he focused on a lot was the fact that my levels were unstable for so long and what that was doing to my body. But, believe it or not, what the major focus was on, was the amount of fatigue I was experiencing. Even when I had applied because of the MS, they asked me, and my doctors to submit in writing, the extent of the fatigue. I don't know why this is such a huge factor in their determination; especially with me since I had so many things that were harder for me to cope with. But apparently it is very important when going for this. I know this is an option you hope to never face, and believe me it is not one I wanted to face either especially since I am only 38 years old. I'm sry if this post is too long, but I wanted to share my story with this. I know I answered your question carolyn about wanting to know if anyone received disability for graves, but I wanted to share in case there are people in here who feel they need to take this route but haven't because they didn't think they could get it for this. Take care everyone. Deb L. > I was wondering-I know millions of people have Graves.Does any of > you know anyone who has got disability because of the Graves.This is > a possibliity that I don't want to have to face. > Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 I have been trying to work but just can't do it anymore with all the complications from neurosarcoidosis. I have a couple of questions: 1. Any advice out there on how best to qualify for Social Security disability? 2. My sarcoid doctor is considering changing my meds from methotrexate, which no longer seems to be working, to either Imuran or Remicade? Does anyone have experience with either who can tell me what to expect? Thanks for whatever help or advice you can provide. I just joined the group but have had pulmonary sarcoid for about three years and was diagnosed with neurosarcoid, far more troubling, a year ago. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 Jim, I can't give you any advice on SS Disability; I had a private policy and am still trying to get SS Disability myself. I am currently on Imuran 100 mg per day. We just brought it down to that from 200 mg per day due to a low white blood count. On Imuran (as on most of these other drugs) you have to have regular bloodwork to check for one thing or the other. From what the other have told me (Rose, Tracie) is that you really need two immunosuppresants to really be successful, but one of them can comment on that. Other that the white count problem I am doing ok on the Imuran. Take care. Terri G. > > I have been trying to work but just can't do it anymore with all the > complications from neurosarcoidosis. I have a couple of questions: > 1. Any advice out there on how best to qualify for Social Security > disability? > 2. My sarcoid doctor is considering changing my meds from > methotrexate, which no longer seems to be working, to either Imuran or > Remicade? Does anyone have experience with either who can tell me what > to expect? > Thanks for whatever help or advice you can provide. I just joined the > group but have had pulmonary sarcoid for about three years and was > diagnosed with neurosarcoid, far more troubling, a year ago. > Quote Link to comment Share on other sites More sharing options...
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