Guest guest Posted May 17, 2001 Report Share Posted May 17, 2001 My husband had to go on Social Security Disability when he was dx with MS because he wasn't able to work any longer. He will get that till he's 65 then it just goes to regular Social Security. He had no trouble getting it on the first try. Once he got that, then he was able to get Medicare a year later. My daughter is on Social Security Income and she gets Medicaid. She had never been able to work so didn't have the credits to get SSD. The paper work is quite overwhelming, but the people at SS will help you fill it out if you need them to. Best to call their office, and they will let you know what you qualify to receive. Usually if you are turned down because you don't have enough medical information then you can get your doctor to help with more data. After that then it's time to get a lawyer who specializes in that field to have them help you get it. If you don't receive it then the lawyer can't usually charge you anything. marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 Hi, Jim. I'm sorry that you have NS, but you have found a great place to get information & support. We have had a variety of experiences on the disability issue, but there are some general principles to consider. Our fearless leader, Tracie, explains it all so well, so I'm just going to use one of her previous posts:Two years ago when I applied for my SSDI, I was able to get it to go thru on the first try, without a lawyer. Yes, it is burdensome, but we have a disease that:1. Mimics Multiple Sclerosis-- that is we have some demylination that happens at the extremities--meaning our nerve endings of our fingers, hands, feet, then comes upward to our spine and brains. This is primarily why we get Peripheral Neuropathy.2. Mimics Chronic Fatigue Syndrome. We all know the total exhaustion-- it's not like you've got the flu and are wiped out-- you are just plain wiped out-- no amount of sleep or rest is renewing. 3. Mimics Dementia, with Alzheimers type influence. Most of us have short-term memory loss. We lose the ability to multi-task, problem solve, to remember what we were doing, and why. Most of us have trouble communicating- because the frontal lobe (Executive Cortex) where these skills lay, becomes affected by the sarcoidosis. It can either be in the form of granulomas (plaques) on the brain, or by vasculitis (inflammation of the blood vessels) that effect the brain. When these vessels become inflamed, they cut off blood circulation to the area of inflammation, and we lose that part of the brains function. This can be confirmed with Neuropsychiatric Testing. 4. Mimics Rheumatoid Arthritis. The systemic inflammation with sarcoidosis attacks our joints and ligaments, as well as the muscles- and is the primary reason that so many of us have severe hand and ankle/foot pain. This can be seen by the ACE blood test, which will generally be high. (Not always--and if you're on prednisone, you can get false lows.)5. Mimics Peripheral Neuropathy, and Small Nerve Fibre Neuropathy. Your peripheral nerves are the long nerves going to your arms and legs. The Small nerve neuropathy is that "burning, tingling" sensation. It often feels like you skin wants to ignite itself, and even air hurts. It also has that horrible feeling like when you've played in the snow without gloves on, and your hands are so cold, they burn as the feeling returns-- but for us, it's almost constant.So when you file for SSDI, it's important to explain this to the examiners. Get letters from friends and coworkers that honestly state what they've seen change over time. Have someone go with you to the interview. If you need assistive devices, use them-- take your cane, your oxygen, your tape recorder, your spouse or best friend, that has gone on this journey with you. If you don't understand what they're telling you-- ask questions. I honestly couldn't get how the 6 month retro-active pay thing went, and my sister and the examiner tried multiple ways to explain it. I still couldn't get it. (Numbers had always come easily, so this was huge- and my job would have required me to comprehend those things.)Make sure you outline the changes you experience. If you can no longer shower daily, cook meals, follow recipe instructions, lose your car in the parking lot. If you can no longer drive, or read a map, or you fall asleep at your desk, or on the computer, or while sitting in the shower, because you are to weak to stand-- tell them. If you find that your sex life is gone, or changed, speak up. If your relationships with friends and families have ended, or your disease makes it impossible to make that lunch date, and after you've stood someone up a couple of times, so you no longer hear from them-- speak up. I will tell you this-- it's not fun having to defend the fact that you are sick, and that even the most intimate parts of your life have changed-- but you need to do this. You will feel like quitting, or you'll find the strength to do what's right by you. SSDI is something we all paid into, and it was developed for people that worked, but by fate-are no longer able to do so. You will be told it's "Welfare." That will break your heart. We aren't "welfare" programed. We worked, we would rather be working, and we'd sure as hell rather be healthy and not screwing with SSDI. It is important that you follow thru with your application, meet their deadlines, if they send you to their MD's, go. If you get to the point where they are sending you to their MD's-- get an attorney at that time. That way someone can set up a "counter" exam so that if you do get someone that has no knowledge of NS, you can counter his report with one from an MD that does know about your disease.The reason that it is so important to follow thru is this-- when you've been unable to work for 2 years, Medicare will kick in and help you with your medical expenses. Depending on your income, you may have qualified for Medi-Caid or MediCal; up to that point. Once you have Medicare, you can get a better qualify of care and treatment. (The MediCaid programs pay only about thirty cents on the dollar, so the state programs seem to limit people on the kinds of tests that can be run, or even that the MD will order.) This is a very real problem, and one that does have a time-line end, if you follow thru. Take in the print-outs from the sites we share-- these are such important documents, and will help with the education of the examiners at every level. This is one way that we are advocating for ourself right now-- and prayerfully down the road, it will not be such a battle for the next generation. Truly,TracieAnd regarding medications, again, directly from the horse's mouth (sorry, Tracie!), taken from a recent post to another member: Prednisone is always the MD's first choice. Your fiance is already showing signs of multi-systemic and neurosarcoidosis. So he really needs a combination-- pred is great if it is just the lungs-- but when our bodies have shown signs in our eyes, our memory-- it is so important to get on one of the steroid sparing immunosupressants. Imuran, Methotrexate, Plaquenil, Enbrel, Humira, Arava are all good starting points. The challenge with any of these meds is that you have to find a cocktail that works for you, and that will take time. Plaquenil is great for lungs, but doesn't seem to help with the arthritic pain caused by the sarc. Methotrexate is good for the body pain and mind involvement. Imuran helps with the systemic inflammation. What they know now is that when you take away the immunosupressant, then the sarc generally comes back-- even more intensely. WWW.arthritis .org is a great site for the drug info. It has the diferent catagories or anti-inflammatories, immunosupressants, Biologicals, and DMARDS. (Disease modifying antirheumatic drugs.) Check it out. www.stopsarcoidosis.org is another great site that can give you info on systemic saracoidosis and treatment options. Jim, I hope this is helpful. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 Climb to the top of the charts! Play Star Shuffle: the word scramble challenge with star power. Play Now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Thanks Rose. That's very helpful. Maybe you can help me with something else that's very troublesome. My doctor sent me into the mergency room the other night because I kept having what felt like skipped heartbeats. Only the EKG they took didn't show any. Now I'm wondering what this sensation is. It feels like hiccups in my chest and won't go away. Any clue? I feel stupid asking but it's very strange and when they're the worse, I seem to feel the worse.Any clue?Rose wrote: Hi, Jim. I'm sorry that you have NS, but you have found a great place to get information & support. We have had a variety of experiences on the disability issue, but there are some general principles to consider. Our fearless leader, Tracie, explains it all so well, so I'm just going to use one of her previous posts:Two years ago when I applied for my SSDI, I was able to get it to go thru on the first try, without a lawyer. Yes, it is burdensome, but we have a disease that:1. Mimics Multiple Sclerosis-- that is we have some demylination that happens at the extremities--meaning our nerve endings of our fingers, hands, feet, then comes upward to our spine and brains. This is primarily why we get Peripheral Neuropathy.2. Mimics Chronic Fatigue Syndrome. We all know the total exhaustion-- it's not like you've got the flu and are wiped out-- you are just plain wiped out-- no amount of sleep or rest is renewing. 3. Mimics Dementia, with Alzheimers type influence. Most of us have short-term memory loss. We lose the ability to multi-task, problem solve, to remember what we were doing, and why. Most of us have trouble communicating- because the frontal lobe (Executive Cortex) where these skills lay, becomes affected by the sarcoidosis. It can either be in the form of granulomas (plaques) on the brain, or by vasculitis (inflammation of the blood vessels) that effect the brain. When these vessels become inflamed, they cut off blood circulation to the area of inflammation, and we lose that part of the brains function. This can be confirmed with Neuropsychiatric Testing. 4. Mimics Rheumatoid Arthritis. The systemic inflammation with sarcoidosis attacks our joints and ligaments, as well as the muscles- and is the primary reason that so many of us have severe hand and ankle/foot pain. This can be seen by the ACE blood test, which will generally be high. (Not always--and if you're on prednisone, you can get false lows.)5. Mimics Peripheral Neuropathy, and Small Nerve Fibre Neuropathy. Your peripheral nerves are the long nerves going to your arms and legs. The Small nerve neuropathy is that "burning, tingling" sensation. It often feels like you skin wants to ignite itself, and even air hurts. It also has that horrible feeling like when you've played in the snow without gloves on, and your hands are so cold, they burn as the feeling returns-- but for us, it's almost constant.So when you file for SSDI, it's important to explain this to the examiners. Get letters from friends and coworkers that honestly state what they've seen change over time. Have someone go with you to the interview. If you need assistive devices, use them-- take your cane, your oxygen, your tape recorder, your spouse or best friend, that has gone on this journey with you. If you don't understand what they're telling you-- ask questions. I honestly couldn't get how the 6 month retro-active pay thing went, and my sister and the examiner tried multiple ways to explain it. I still couldn't get it. (Numbers had always come easily, so this was huge- and my job would have required me to comprehend those things.)Make sure you outline the changes you experience. If you can no longer shower daily, cook meals, follow recipe instructions, lose your car in the parking lot. If you can no longer drive, or read a map, or you fall asleep at your desk, or on the computer, or while sitting in the shower, because you are to weak to stand-- tell them. If you find that your sex life is gone, or changed, speak up. If your relationships with friends and families have ended, or your disease makes it impossible to make that lunch date, and after you've stood someone up a couple of times, so you no longer hear from them-- speak up. I will tell you this-- it's not fun having to defend the fact that you are sick, and that even the most intimate parts of your life have changed-- but you need to do this. You will feel like quitting, or you'll find the strength to do what's right by you. SSDI is something we all paid into, and it was developed for people that worked, but by fate-are no longer able to do so. You will be told it's "Welfare." That will break your heart. We aren't "welfare" programed. We worked, we would rather be working, and we'd sure as hell rather be healthy and not screwing with SSDI. It is important that you follow thru with your application, meet their deadlines, if they send you to their MD's, go. If you get to the point where they are sending you to their MD's-- get an attorney at that time. That way someone can set up a "counter" exam so that if you do get someone that has no knowledge of NS, you can counter his report with one from an MD that does know about your disease.The reason that it is so important to follow thru is this-- when you've been unable to work for 2 years, Medicare will kick in and help you with your medical expenses. Depending on your income, you may have qualified for Medi-Caid or MediCal; up to that point. Once you have Medicare, you can get a better qualify of care and treatment. (The MediCaid programs pay only about thirty cents on the dollar, so the state programs seem to limit people on the kinds of tests that can be run, or even that the MD will order.) This is a very real problem, and one that does have a time-line end, if you follow thru. Take in the print-outs from the sites we share-- these are such important documents, and will help with the education of the examiners at every level. This is one way that we are advocating for ourself right now-- and prayerfully down the road, it will not be such a battle for the next generation. Truly,TracieAnd regarding medications, again, directly from the horse's mouth (sorry, Tracie!), taken from a recent post to another member: Prednisone is always the MD's first choice. Your fiance is already showing signs of multi-systemic and neurosarcoidosis. So he really needs a combination-- pred is great if it is just the lungs-- but when our bodies have shown signs in our eyes, our memory-- it is so important to get on one of the steroid sparing immunosupressants. Imuran, Methotrexate, Plaquenil, Enbrel, Humira, Arava are all good starting points. The challenge with any of these meds is that you have to find a cocktail that works for you, and that will take time. Plaquenil is great for lungs, but doesn't seem to help with the arthritic pain caused by the sarc. Methotrexate is good for the body pain and mind involvement. Imuran helps with the systemic inflammation. What they know now is that when you take away the immunosupressant, then the sarc generally comes back-- even more intensely. WWW.arthritis .org is a great site for the drug info. It has the diferent catagories or anti-inflammatories, immunosupressants, Biologicals, and DMARDS. (Disease modifying antirheumatic drugs.) Check it out. www.stopsarcoidosis.org is another great site that can give you info on systemic saracoidosis and treatment options. Jim, I hope this is helpful. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 Climb to the top of the charts! Play Star Shuffle: the word scramble challenge with star power. Play Now! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Thanks Rose. That's very helpful. Maybe you can help me with something else that's very troublesome. My doctor sent me into the mergency room the other night because I kept having what felt like skipped heartbeats. Only the EKG they took didn't show any. Now I'm wondering what this sensation is. It feels like hiccups in my chest and won't go away. Any clue? I feel stupid asking but it's very strange and when they're the worse, I seem to feel the worse.Any clue?Rose wrote: Hi, Jim. I'm sorry that you have NS, but you have found a great place to get information & support. We have had a variety of experiences on the disability issue, but there are some general principles to consider. Our fearless leader, Tracie, explains it all so well, so I'm just going to use one of her previous posts:Two years ago when I applied for my SSDI, I was able to get it to go thru on the first try, without a lawyer. Yes, it is burdensome, but we have a disease that:1. Mimics Multiple Sclerosis-- that is we have some demylination that happens at the extremities--meaning our nerve endings of our fingers, hands, feet, then comes upward to our spine and brains. This is primarily why we get Peripheral Neuropathy.2. Mimics Chronic Fatigue Syndrome. We all know the total exhaustion-- it's not like you've got the flu and are wiped out-- you are just plain wiped out-- no amount of sleep or rest is renewing. 3. Mimics Dementia, with Alzheimers type influence. Most of us have short-term memory loss. We lose the ability to multi-task, problem solve, to remember what we were doing, and why. Most of us have trouble communicating- because the frontal lobe (Executive Cortex) where these skills lay, becomes affected by the sarcoidosis. It can either be in the form of granulomas (plaques) on the brain, or by vasculitis (inflammation of the blood vessels) that effect the brain. When these vessels become inflamed, they cut off blood circulation to the area of inflammation, and we lose that part of the brains function. This can be confirmed with Neuropsychiatric Testing. 4. Mimics Rheumatoid Arthritis. The systemic inflammation with sarcoidosis attacks our joints and ligaments, as well as the muscles- and is the primary reason that so many of us have severe hand and ankle/foot pain. This can be seen by the ACE blood test, which will generally be high. (Not always--and if you're on prednisone, you can get false lows.)5. Mimics Peripheral Neuropathy, and Small Nerve Fibre Neuropathy. Your peripheral nerves are the long nerves going to your arms and legs. The Small nerve neuropathy is that "burning, tingling" sensation. It often feels like you skin wants to ignite itself, and even air hurts. It also has that horrible feeling like when you've played in the snow without gloves on, and your hands are so cold, they burn as the feeling returns-- but for us, it's almost constant.So when you file for SSDI, it's important to explain this to the examiners. Get letters from friends and coworkers that honestly state what they've seen change over time. Have someone go with you to the interview. If you need assistive devices, use them-- take your cane, your oxygen, your tape recorder, your spouse or best friend, that has gone on this journey with you. If you don't understand what they're telling you-- ask questions. I honestly couldn't get how the 6 month retro-active pay thing went, and my sister and the examiner tried multiple ways to explain it. I still couldn't get it. (Numbers had always come easily, so this was huge- and my job would have required me to comprehend those things.)Make sure you outline the changes you experience. If you can no longer shower daily, cook meals, follow recipe instructions, lose your car in the parking lot. If you can no longer drive, or read a map, or you fall asleep at your desk, or on the computer, or while sitting in the shower, because you are to weak to stand-- tell them. If you find that your sex life is gone, or changed, speak up. If your relationships with friends and families have ended, or your disease makes it impossible to make that lunch date, and after you've stood someone up a couple of times, so you no longer hear from them-- speak up. I will tell you this-- it's not fun having to defend the fact that you are sick, and that even the most intimate parts of your life have changed-- but you need to do this. You will feel like quitting, or you'll find the strength to do what's right by you. SSDI is something we all paid into, and it was developed for people that worked, but by fate-are no longer able to do so. You will be told it's "Welfare." That will break your heart. We aren't "welfare" programed. We worked, we would rather be working, and we'd sure as hell rather be healthy and not screwing with SSDI. It is important that you follow thru with your application, meet their deadlines, if they send you to their MD's, go. If you get to the point where they are sending you to their MD's-- get an attorney at that time. That way someone can set up a "counter" exam so that if you do get someone that has no knowledge of NS, you can counter his report with one from an MD that does know about your disease.The reason that it is so important to follow thru is this-- when you've been unable to work for 2 years, Medicare will kick in and help you with your medical expenses. Depending on your income, you may have qualified for Medi-Caid or MediCal; up to that point. Once you have Medicare, you can get a better qualify of care and treatment. (The MediCaid programs pay only about thirty cents on the dollar, so the state programs seem to limit people on the kinds of tests that can be run, or even that the MD will order.) This is a very real problem, and one that does have a time-line end, if you follow thru. Take in the print-outs from the sites we share-- these are such important documents, and will help with the education of the examiners at every level. This is one way that we are advocating for ourself right now-- and prayerfully down the road, it will not be such a battle for the next generation. Truly,TracieAnd regarding medications, again, directly from the horse's mouth (sorry, Tracie!), taken from a recent post to another member: Prednisone is always the MD's first choice. Your fiance is already showing signs of multi-systemic and neurosarcoidosis. So he really needs a combination-- pred is great if it is just the lungs-- but when our bodies have shown signs in our eyes, our memory-- it is so important to get on one of the steroid sparing immunosupressants. Imuran, Methotrexate, Plaquenil, Enbrel, Humira, Arava are all good starting points. The challenge with any of these meds is that you have to find a cocktail that works for you, and that will take time. Plaquenil is great for lungs, but doesn't seem to help with the arthritic pain caused by the sarc. Methotrexate is good for the body pain and mind involvement. Imuran helps with the systemic inflammation. What they know now is that when you take away the immunosupressant, then the sarc generally comes back-- even more intensely. WWW.arthritis .org is a great site for the drug info. It has the diferent catagories or anti-inflammatories, immunosupressants, Biologicals, and DMARDS. (Disease modifying antirheumatic drugs.) Check it out. www.stopsarcoidosis.org is another great site that can give you info on systemic saracoidosis and treatment options. Jim, I hope this is helpful. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 Climb to the top of the charts! Play Star Shuffle: the word scramble challenge with star power. Play Now! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 directly from the horse's mouth (sorry, Tracie!), LOL! Rosie, at least you didn't say horse's ass-- although some would agree! Jim-- she gave you great suggestions! Blessings, Tracie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 directly from the horse's mouth (sorry, Tracie!), LOL! Rosie, at least you didn't say horse's ass-- although some would agree! Jim-- she gave you great suggestions! Blessings, Tracie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2007 Report Share Posted October 29, 2007 Jim, were you having the sensation of skipped beats while on the monitor? Also, did they leave you on a heart monitor for awhile, or just do a rhythm strip (very short recording)? It might be that you didn't have an arrhythmia during the test; you might need a Holter monitor. You are hooked up to an EKG for 24-48 hrs. at home, with a button to push when you feel symptoms. I also had a log to fill out, explaining symptoms. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: jimlarkin53@...Date: Sun, 28 Oct 2007 06:04:25 -0700Subject: RE: Social security Thanks Rose. That's very helpful. Maybe you can help me with something else that's very troublesome. My doctor sent me into the mergency room the other night because I kept having what felt like skipped heartbeats. Only the EKG they took didn't show any. Now I'm wondering what this sensation is. It feels like hiccups in my chest and won't go away. Any clue? I feel stupid asking but it's very strange and when they're the worse, I seem to feel the worse.Any clue?Rose <mamadogrose (AT) hotmail (DOT) com> wrote: Hi, Jim. I'm sorry that you have NS, but you have found a great place to get information & support. We have had a variety of experiences on the disability issue, but there are some general principles to consider. Our fearless leader, Tracie, explains it all so well, so I'm just going to use one of her previous posts:Two years ago when I applied for my SSDI, I was able to get it to go thru on the first try, without a lawyer. Yes, it is burdensome, but we have a disease that:1. Mimics Multiple Sclerosis-- that is we have some demylination that happens at the extremities--meaning our nerve endings of our fingers, hands, feet, then comes upward to our spine and brains. This is primarily why we get Peripheral Neuropathy.2. Mimics Chronic Fatigue Syndrome. We all know the total exhaustion-- it's not like you've got the flu and are wiped out-- you are just plain wiped out-- no amount of sleep or rest is renewing. 3. Mimics Dementia, with Alzheimers type influence. Most of us have short-term memory loss. We lose the ability to multi-task, problem solve, to remember what we were doing, and why. Most of us have trouble communicating- because the frontal lobe (Executive Cortex) where these skills lay, becomes affected by the sarcoidosis. It can either be in the form of granulomas (plaques) on the brain, or by vasculitis (inflammation of the blood vessels) that effect the brain. When these vessels become inflamed, they cut off blood circulation to the area of inflammation, and we lose that part of the brains function. This can be confirmed with Neuropsychiatric Testing. 4. Mimics Rheumatoid Arthritis. The systemic inflammation with sarcoidosis attacks our joints and ligaments, as well as the muscles- and is the primary reason that so many of us have severe hand and ankle/foot pain. This can be seen by the ACE blood test, which will generally be high. (Not always--and if you're on prednisone, you can get false lows.)5. Mimics Peripheral Neuropathy, and Small Nerve Fibre Neuropathy. Your peripheral nerves are the long nerves going to your arms and legs. The Small nerve neuropathy is that "burning, tingling" sensation. It often feels like you skin wants to ignite itself, and even air hurts. It also has that horrible feeling like when you've played in the snow without gloves on, and your hands are so cold, they burn as the feeling returns-- but for us, it's almost constant.So when you file for SSDI, it's important to explain this to the examiners. Get letters from friends and coworkers that honestly state what they've seen change over time. Have someone go with you to the interview. If you need assistive devices, use them-- take your cane, your oxygen, your tape recorder, your spouse or best friend, that has gone on this journey with you. If you don't understand what they're telling you-- ask questions. I honestly couldn't get how the 6 month retro-active pay thing went, and my sister and the examiner tried multiple ways to explain it. I still couldn't get it. (Numbers had always come easily, so this was huge- and my job would have required me to comprehend those things.)Make sure you outline the changes you experience. If you can no longer shower daily, cook meals, follow recipe instructions, lose your car in the parking lot. If you can no longer drive, or read a map, or you fall asleep at your desk, or on the computer, or while sitting in the shower, because you are to weak to stand-- tell them. If you find that your sex life is gone, or changed, speak up. If your relationships with friends and families have ended, or your disease makes it impossible to make that lunch date, and after you've stood someone up a couple of times, so you no longer hear from them-- speak up. I will tell you this-- it's not fun having to defend the fact that you are sick, and that even the most intimate parts of your life have changed-- but you need to do this. You will feel like quitting, or you'll find the strength to do what's right by you. SSDI is something we all paid into, and it was developed for people that worked, but by fate-are no longer able to do so. You will be told it's "Welfare." That will break your heart. We aren't "welfare" programed. We worked, we would rather be working, and we'd sure as hell rather be healthy and not screwing with SSDI. It is important that you follow thru with your application, meet their deadlines, if they send you to their MD's, go. If you get to the point where they are sending you to their MD's-- get an attorney at that time. That way someone can set up a "counter" exam so that if you do get someone that has no knowledge of NS, you can counter his report with one from an MD that does know about your disease.The reason that it is so important to follow thru is this-- when you've been unable to work for 2 years, Medicare will kick in and help you with your medical expenses. Depending on your income, you may have qualified for Medi-Caid or MediCal; up to that point. Once you have Medicare, you can get a better qualify of care and treatment. (The MediCaid programs pay only about thirty cents on the dollar, so the state programs seem to limit people on the kinds of tests that can be run, or even that the MD will order.) This is a very real problem, and one that does have a time-line end, if you follow thru. Take in the print-outs from the sites we share-- these are such important documents, and will help with the education of the examiners at every level. This is one way that we are advocating for ourself right now-- and prayerfully down the road, it will not be such a battle for the next generation. Truly,TracieAnd regarding medications, again, directly from the horse's mouth (sorry, Tracie!), taken from a recent post to another member: Prednisone is always the MD's first choice. Your fiance is already showing signs of multi-systemic and neurosarcoidosis. So he really needs a combination-- pred is great if it is just the lungs-- but when our bodies have shown signs in our eyes, our memory-- it is so important to get on one of the steroid sparing immunosupressants. Imuran, Methotrexate, Plaquenil, Enbrel, Humira, Arava are all good starting points. The challenge with any of these meds is that you have to find a cocktail that works for you, and that will take time. Plaquenil is great for lungs, but doesn't seem to help with the arthritic pain caused by the sarc. Methotrexate is good for the body pain and mind involvement. Imuran helps with the systemic inflammation. What they know now is that when you take away the immunosupressant, then the sarc generally comes back-- even more intensely. WWW.arthritis .org is a great site for the drug info. It has the diferent catagories or anti-inflammatories, immunosupressants, Biologicals, and DMARDS. (Disease modifying antirheumatic drugs.) Check it out. www.stopsarcoidosis.org is another great site that can give you info on systemic saracoidosis and treatment options. Jim, I hope this is helpful. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 Climb to the top of the charts! Play Star Shuffle: the word scramble challenge with star power. Play Now! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2007 Report Share Posted October 29, 2007 Jim, were you having the sensation of skipped beats while on the monitor? Also, did they leave you on a heart monitor for awhile, or just do a rhythm strip (very short recording)? It might be that you didn't have an arrhythmia during the test; you might need a Holter monitor. You are hooked up to an EKG for 24-48 hrs. at home, with a button to push when you feel symptoms. I also had a log to fill out, explaining symptoms. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: jimlarkin53@...Date: Sun, 28 Oct 2007 06:04:25 -0700Subject: RE: Social security Thanks Rose. That's very helpful. Maybe you can help me with something else that's very troublesome. My doctor sent me into the mergency room the other night because I kept having what felt like skipped heartbeats. Only the EKG they took didn't show any. Now I'm wondering what this sensation is. It feels like hiccups in my chest and won't go away. Any clue? I feel stupid asking but it's very strange and when they're the worse, I seem to feel the worse.Any clue?Rose <mamadogrose (AT) hotmail (DOT) com> wrote: Hi, Jim. I'm sorry that you have NS, but you have found a great place to get information & support. We have had a variety of experiences on the disability issue, but there are some general principles to consider. Our fearless leader, Tracie, explains it all so well, so I'm just going to use one of her previous posts:Two years ago when I applied for my SSDI, I was able to get it to go thru on the first try, without a lawyer. Yes, it is burdensome, but we have a disease that:1. Mimics Multiple Sclerosis-- that is we have some demylination that happens at the extremities--meaning our nerve endings of our fingers, hands, feet, then comes upward to our spine and brains. This is primarily why we get Peripheral Neuropathy.2. Mimics Chronic Fatigue Syndrome. We all know the total exhaustion-- it's not like you've got the flu and are wiped out-- you are just plain wiped out-- no amount of sleep or rest is renewing. 3. Mimics Dementia, with Alzheimers type influence. Most of us have short-term memory loss. We lose the ability to multi-task, problem solve, to remember what we were doing, and why. Most of us have trouble communicating- because the frontal lobe (Executive Cortex) where these skills lay, becomes affected by the sarcoidosis. It can either be in the form of granulomas (plaques) on the brain, or by vasculitis (inflammation of the blood vessels) that effect the brain. When these vessels become inflamed, they cut off blood circulation to the area of inflammation, and we lose that part of the brains function. This can be confirmed with Neuropsychiatric Testing. 4. Mimics Rheumatoid Arthritis. The systemic inflammation with sarcoidosis attacks our joints and ligaments, as well as the muscles- and is the primary reason that so many of us have severe hand and ankle/foot pain. This can be seen by the ACE blood test, which will generally be high. (Not always--and if you're on prednisone, you can get false lows.)5. Mimics Peripheral Neuropathy, and Small Nerve Fibre Neuropathy. Your peripheral nerves are the long nerves going to your arms and legs. The Small nerve neuropathy is that "burning, tingling" sensation. It often feels like you skin wants to ignite itself, and even air hurts. It also has that horrible feeling like when you've played in the snow without gloves on, and your hands are so cold, they burn as the feeling returns-- but for us, it's almost constant.So when you file for SSDI, it's important to explain this to the examiners. Get letters from friends and coworkers that honestly state what they've seen change over time. Have someone go with you to the interview. If you need assistive devices, use them-- take your cane, your oxygen, your tape recorder, your spouse or best friend, that has gone on this journey with you. If you don't understand what they're telling you-- ask questions. I honestly couldn't get how the 6 month retro-active pay thing went, and my sister and the examiner tried multiple ways to explain it. I still couldn't get it. (Numbers had always come easily, so this was huge- and my job would have required me to comprehend those things.)Make sure you outline the changes you experience. If you can no longer shower daily, cook meals, follow recipe instructions, lose your car in the parking lot. If you can no longer drive, or read a map, or you fall asleep at your desk, or on the computer, or while sitting in the shower, because you are to weak to stand-- tell them. If you find that your sex life is gone, or changed, speak up. If your relationships with friends and families have ended, or your disease makes it impossible to make that lunch date, and after you've stood someone up a couple of times, so you no longer hear from them-- speak up. I will tell you this-- it's not fun having to defend the fact that you are sick, and that even the most intimate parts of your life have changed-- but you need to do this. You will feel like quitting, or you'll find the strength to do what's right by you. SSDI is something we all paid into, and it was developed for people that worked, but by fate-are no longer able to do so. You will be told it's "Welfare." That will break your heart. We aren't "welfare" programed. We worked, we would rather be working, and we'd sure as hell rather be healthy and not screwing with SSDI. It is important that you follow thru with your application, meet their deadlines, if they send you to their MD's, go. If you get to the point where they are sending you to their MD's-- get an attorney at that time. That way someone can set up a "counter" exam so that if you do get someone that has no knowledge of NS, you can counter his report with one from an MD that does know about your disease.The reason that it is so important to follow thru is this-- when you've been unable to work for 2 years, Medicare will kick in and help you with your medical expenses. Depending on your income, you may have qualified for Medi-Caid or MediCal; up to that point. Once you have Medicare, you can get a better qualify of care and treatment. (The MediCaid programs pay only about thirty cents on the dollar, so the state programs seem to limit people on the kinds of tests that can be run, or even that the MD will order.) This is a very real problem, and one that does have a time-line end, if you follow thru. Take in the print-outs from the sites we share-- these are such important documents, and will help with the education of the examiners at every level. This is one way that we are advocating for ourself right now-- and prayerfully down the road, it will not be such a battle for the next generation. Truly,TracieAnd regarding medications, again, directly from the horse's mouth (sorry, Tracie!), taken from a recent post to another member: Prednisone is always the MD's first choice. Your fiance is already showing signs of multi-systemic and neurosarcoidosis. So he really needs a combination-- pred is great if it is just the lungs-- but when our bodies have shown signs in our eyes, our memory-- it is so important to get on one of the steroid sparing immunosupressants. Imuran, Methotrexate, Plaquenil, Enbrel, Humira, Arava are all good starting points. The challenge with any of these meds is that you have to find a cocktail that works for you, and that will take time. Plaquenil is great for lungs, but doesn't seem to help with the arthritic pain caused by the sarc. Methotrexate is good for the body pain and mind involvement. Imuran helps with the systemic inflammation. What they know now is that when you take away the immunosupressant, then the sarc generally comes back-- even more intensely. WWW.arthritis .org is a great site for the drug info. It has the diferent catagories or anti-inflammatories, immunosupressants, Biologicals, and DMARDS. (Disease modifying antirheumatic drugs.) Check it out. www.stopsarcoidosis.org is another great site that can give you info on systemic saracoidosis and treatment options. Jim, I hope this is helpful. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 Climb to the top of the charts! Play Star Shuffle: the word scramble challenge with star power. Play Now! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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