MTRJ75 Posted March 4, 2020 Report Share Posted March 4, 2020 Got my denial notice from disability today. Not unexpected. I knew I was screwed when I went for their independent doctor's exam, which was a bit of a horror show. Not sure whether it was fortunate or unfortunate I wasn't at my worst that day because if I were, I wouldn't have been able to get there. But none the less, I was exhausted an shaking internally by the time I got to see the doctor, two hours after arriving. I actually considered it a positive sign when he didn't ask me what dysautonomia was, but he did write it down as autonomic dysautonomia...as if there were another kind. The entire examination had no relevance to dysautonomia. I was asked to move my limbs forward, bend, and put my hands above my head. He bent my wrists and knees without pain. They took a lying EKG and said it was fine. I asked if he's like to see the any of the ones in my ipad which weren't okay and wondered what kind of jobs I could do lying down. He asked me who did the house work. I responded that I just don't let anyone in the house anymore, but he was adamant that someone had to do the house work. Who vacuumed? Nobody. Somebody had to vacuum. Who vacuumed? When was the last time you vacuumed a room? How far can you walk? I don't know. How far can you walk? It changes every hour and it's not necessarily the walking itself, but the after effects. On a good day, can you ever walk a block? Maybe, but I won't be able to move for an hour or so afterward. Can you shower by yourself? I can shower, I may be able to walk a block and I may be able to vacuum a room. I may be able to do any one of those things on a good day, but just one and then do nothing but lay on the couch for hours afterward. I absolutely knew that the line of questioning was almost discriminatory against dysautonomia and was expecting this rejection letter which is highlighted by such statements as... - my age was a significant consideration because I people evidently can't develop chronic conditions before a certain age. - "Your limbs have pain. However, it does not limit my ability to move about and use your limbs." Absolutely wrong. - "You have experienced heart problems. However, following a recovery period, you should be able to work." This is great news! I'm going to recover from all the cardiac issues. They just don't tell me how long this is going to take. So now I have 60 days to appeal. I guess my question is if anyone knows of any lawyers or groups that can help people with our condition with these claims and appeals, considering the conditions work against us. Ideally, what I'd like to do is challenge the whole system to change how conditions like ours are discriminated against by the current process, but I doubt anyone is going to want to take on that fight or that I'd have the energy to do it anyway. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 4, 2020 Report Share Posted March 4, 2020 @MTRJ75 - welcome to the club!!! I went through a similar experience. When I became disabled I had a Long Term Disability insurance and they helped me with the whole process. They provided a lawyer etc. In the beginning they got hung up on the fact that I take autonomic seizures - they sent me questionnaires about epilepsy. Of course they did not approve that. So I appealed and the next time they "processed" me under cardiac problems. Since my several monitors "only" showed sinus tachycardia ( a harmless rhythm ) and my EKG's were essentially normal they decided that my frequent syncopal episodes were not a reason for me to have to stop working. ( I used to pass out several times a week at work ). All of this despite the fact that my PCP filled out all of the forms they sent him clearly stating what I had and the symptoms that made functioning at all ( let alone at work ) impossible. I was denied again. So I had to wait over a year for a hearing with a Judge. Once there I explained everything that had happened to me and what POTS looks like, with all the gory details. He awarded me SSDI on the spot and said that he had never heard of POTS but he clearly understood how it affects a life. It is pretty standard to be denied on the first try. Most lawyers will not even see you until after your first denial. You can find disability lawyers online or check with the SS office in your area, they have some contacts. You don't have to go with lawyers in your state, many people go with some of those big disability companies, mine was in New England. The lawyer they sent for the hearing flew in from there. They take care of everything and deal with all of the paperwork and forms. They also help you to fill out the questionnaires. 18 minutes ago, MTRJ75 said: Ideally, what I'd like to do is challenge the whole system to change how conditions like ours are discriminated against by the current process, Oh my - good luck! --- Don't be discouraged, it is a real frustrating process and yes - they are generally very suspicious and can make you feel like garbage. Just keep going. Best of luck!!! Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 4, 2020 Report Share Posted March 4, 2020 I had to get a lawyer. They don't charge you, just take part of the backpay. I never saw a doctor but I had to go in front of a judge and explain everything to someone who knew nothing medical. At the time I was battling autoimmune encephalitis, hyper pots, interstitial cystitis, and I have ME/CFS. They just sent me a letter recently to see if I've improved and truth is, I can hardly leave my bed. So we'll see what they say. They are very mis informed about chronic illnesses. Best of luck appealing. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted March 4, 2020 Author Report Share Posted March 4, 2020 The letter said different states and programs have different rules, but the universal thing seems to be a misunderstanding of invisible chronic illnesses. Thankfully you were able to find compassionate judges and were able to articulate your cases well enough. I'm not even sure I could do that depending on the day. I was hoping to avoid having to give away a good chunk of any back money I get because I know it's not going to be a lot anyway, but I need someone who has the know how and energy to push through and find the holes in the system. @Pistol In my case, my current PCP is working more against me than for me. He's my 4th one in five years due to insurance issues and there really isn't anyone else in the immediate area who takes my insurance, so I'm stuck for the time being. He called me in for an appointment when he got the letter from disability and gave me the letter. Said he wasn't going to send them all his notes. It was too much. From the correspondence I got from the disability office, I'm not sure he ever sent them anything, which probably didn't mean much since he doesn't even know what POTS or dysautonomia are. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 4, 2020 Report Share Posted March 4, 2020 9 hours ago, MTRJ75 said: He called me in for an appointment when he got the letter from disability and gave me the letter. Said he wasn't going to send them all his notes. It was too much. Well - that's something! Isn't he supposed to send them that if requested? YOU certainly can demand he send them , or else you can request a copy of any of your medical record and send it yourself. Regarding the forms that SSI requires of him: it is his responsibility as a PCP to fill them out, you just have to be after him to do it on time. 9 hours ago, MTRJ75 said: Thankfully you were able to find compassionate judges and were able to articulate your cases well enough. I'm not even sure I could do that depending on the day. If you end up having to go to a hearing you will have a lawyer with you ( assuming you will get one ), he will do all of the talking. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted March 4, 2020 Author Report Share Posted March 4, 2020 I realized it wasn't worth the effort with my PCP because there was nothing he had that would have helped my cause anyway. The cardio and neuro were the two most important and very cooperative. Quote "You have experienced heart problems. However, following a recovery period, you should be able to work." Two days later, while this is the part that continues to infuriate me the most, it's also beginning to feel like my biggest out because they are acknowledging the condition. I just have to get them to realize they're completely ignorant about the "recovery period". I know they didn't get that from my cardiologist because she suffers minor autonomic issues herself. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 5, 2020 Report Share Posted March 5, 2020 @MTRJ75 - they obviously do not acknowledge that dysautonomia is a chronic condition. I wish there was such a thing as a recovery period for POTS! --- Just keep appealing and get a lawyer. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted May 31, 2020 Author Report Share Posted May 31, 2020 The second attempt has been more comic than the first. I received the same large packet of questions to fill out on May 19th (Tue). It said the response must be received within 10 days of the date on the letter, which was May 13th unless I notify them otherwise. I called that day and said this is going to take me several days to fill out as I can only write or type a page or two per day. Finished it on that Saturday, but with the holiday, wasn't able to mail it out until Tuesday May 26th. Today, May 30th, I got a denial letter dated Thursday May 28th. Considering their packet took several days to get to me, I'm under the impression they made this decision without even getting my responses to their questions. The kicker..."An independent physician" (who no doubt knows nothing about autonomic dysfunction "has determined that my AUTOMATIC DYSFUNCTION is not severe enough to meet our requirements at this time." That's brutal. Even if I had AUTOMATIC dysfunction, I still wouldn't qualify. I had consulted with disability advocate group, who said I had to try again and then contact them again after the next denial. So I'll be talking to them Monday. Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 31, 2020 Report Share Posted May 31, 2020 So sorry @MTRJ75!!! 😖 I would think that AUTOMATIC DYSFUNCTION would mean you are automatically too dysfunct to work .. ? But all jokes aside - once you are denied for the second time you will need a lawyer. I was denied twice as well ( despite the fact that my employer and doc and family begged me to stop working due to the frequent faints, seizures and concussions I experienced at work! ). The next step would be a hearing with an administrative Law Judge, which can take up to 18 months to schedule ( different in different states ). Once I was able to tell the judge face to face what dysautonomia looks like he awarded me SSDI on the spot. Hang in there - it's our government in action!!!!! Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted May 31, 2020 Author Report Share Posted May 31, 2020 Yup, automatic still not good enough. What does it take? I’m just worried there may not be a government in 18 months the way things are going in the country at this point. Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 31, 2020 Report Share Posted May 31, 2020 5 hours ago, MTRJ75 said: I’m just worried there may not be a government in 18 months the way things are going in the country at this point. Take a deep breath, exhale slowly and recite Louis Armstrong: " And I think to myself - what a wonderful world …. " 😉 Quote Link to comment Share on other sites More sharing options...
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