Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 Kathy, I will be 62 in May and I also was turned down. I could apply for early SS retirement, but it's a large difference in benefits and I can qualify for Medicare in 24 months instead of waiting until I'm 66. I consulted an attorney who encouraged me to handle my own appeal before hiring him. He gave me an overview of what they were looking for plus encouraged me to have my doctor write up something to go with the appeal. When I got my records from the doctor, I realized that SS requests medical records and instead of asking specific questions of the doctors, they ask the doctor if there was any specific reason I could not work. My doctor did not submit anything but a copy of the records. The attorney also says, the 2 things they're looking for is 1-have you been disabled 12 months or more; 2-is your life expectancy 12 months or less. He stated that people reviewing the first application are not medical trained people and probably know nothing about this cancer. He also stressed to use the whole word and not CML. In my letter they referred to it as CNL, so I knew they had no idea what kind of cancer this was. I was denied because it stated that my side effects were controlled by my treatment and therefore I should be able to work. In my appeal, I went into graphic description about all my side affects. I stated also that the treatment caused the side effects therefore causing the disability. I tried to give them an idea of my day that would support the fact I could hold out to do a 8 hour a day job. I wrote a 1 page appeal and referred to it in the forms they require you to complete in an appeal. I'm still working on a business that will allow me to schedule work around my limitations and will gladly give up my disability check if I make over the limit. I haven't received a response, but will keep you posted. Let me know if you get additional advice. Barbara Hundley My Personal Assistant Fayetteville, GA Tel: 678-817-6805 Fax: 678-884-8186 <http://www.my-personal-assist.com> www.my-personal-assist.com _____ From: [mailto: ] On Behalf Of kathydf47 Sent: Sunday, April 15, 2007 6:30 AM Subject: [ ] SSDI & cognitive impairment Good morning, I applied for SSDI due to cognitive impairment and fatigue, and I've just been denied. I scored poorly on the cognitive testing, but apparently not poorly enough to satisfy them. I'm appalled by this. If SSDI is not for a 60 year old woman with severe side effects due to Gleevec therapy for leukemia, who is it for? I know that many of you have been approved for SSDI -- and some have been approved due to these same side effects -- so I'm asking for help. Any suggestions for my reconsideration phase of the the appeal? Do any of you know of any data to support cognitive impairment from gleevec therapy? I'm told SS likes data. I've found data re chemo brain in general, but nothing specific to gleevec. Thanks for any help/suggestions. peace, Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 Hi Kathy, I'm sorry you were denied the SSDI. I have tried in the past to locate articles that showed the cognitive effects of Gleevec but like you, I wasn't very successful. Everything I found was general about " chemo brain " . There wasn't anything specific to Gleevec. To further the obstacle, there are numerous articles out there showing that Gleevec can't pass the blood brain barrier so it's hard to argue cognitive effects of a drug that doesn't even reach the brain but we know from all the list members who complain of the exact same side effects that this impairment is indeed real, even if we can't find any articles to support it. The cognitive effects and the hormonal effects that we see sooooo many people complaining about, don't seem to get any attention by the researchers at all which I find frustrating. It's been a while since I've done a search though, so I'll try again to see if I can find anything and I'll let you know. In the mean time, I wish you luck with your case. Take care, Tracey > > Good morning, > > I applied for SSDI due to cognitive impairment and fatigue, and I've > just been denied. I scored poorly on the cognitive testing, but > apparently not poorly enough to satisfy them. > > I'm appalled by this. If SSDI is not for a 60 year old woman with > severe side effects due to Gleevec therapy for leukemia, who is it for? > > I know that many of you have been approved for SSDI -- and some have > been approved due to these same side effects -- so I'm asking for > help. Any suggestions for my reconsideration phase of the the appeal? > > Do any of you know of any data to support cognitive impairment from > gleevec therapy? I'm told SS likes data. I've found data re chemo > brain in general, but nothing specific to gleevec. > > Thanks for any help/suggestions. > > peace, > Kathy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 Thanks for your reply, Barbara. You've given me some good input. It's quite a flawed and inconsistent system, eh? Why do some get through it so effortlessly, and others of us struggle? And I love that the first go round is looked at by non-medical employees. Your doctor sounds similar to mine. And my oncologist did not put any mention of my side effects in my records. None. When I questioned him about this he said he liked to put a positive spin on things. Well, I said, as a cancer survivor I think that's just fabulous in life -- however, in medical records, how about you record the truth? I've asked my oncologist for a strong letter of support at the suggestion of an attorney. I feel he owes me this. Social Security insisted that I take a cognitive impairment test -- and although I scored poorly, the facts that I know the similarity of a banana and an apple, can spell 'world' frontwards and backwards, and know what day it is, make me able to work. It's really quite funny in a disturbing sort of way. Good luck with your appeal, and please do keep me posted. I'll do the same. peace, Kathy > > Kathy, I will be 62 in May and I also was turned down. I could apply for > early SS retirement, but it's a large difference in benefits and I can > qualify for Medicare in 24 months instead of waiting until I'm 66. I > consulted an attorney who encouraged me to handle my own appeal before > hiring him. He gave me an overview of what they were looking for plus > encouraged me to have my doctor write up something to go with the appeal. > When I got my records from the doctor, I realized that SS requests medical > records and instead of asking specific questions of the doctors, they ask > the doctor if there was any specific reason I could not work. My doctor did > not submit anything but a copy of the records. The attorney also says, the > 2 things they're looking for is 1-have you been disabled 12 months or more; > 2-is your life expectancy 12 months or less. He stated that people > reviewing the first application are not medical trained people and probably > know nothing about this cancer. He also stressed to use the whole word and > not CML. In my letter they referred to it as CNL, so I knew they had no idea > what kind of cancer this was. I was denied because it stated that my side > effects were controlled by my treatment and therefore I should be able to > work. In my appeal, I went into graphic description about all my side > affects. I stated also that the treatment caused the side effects therefore > causing the disability. I tried to give them an idea of my day that would > support the fact I could hold out to do a 8 hour a day job. I wrote a 1 > page appeal and referred to it in the forms they require you to complete in > an appeal. I'm still working on a business that will allow me to schedule > work around my limitations and will gladly give up my disability check if I > make over the limit. I haven't received a response, but will keep you > posted. Let me know if you get additional advice. > > > > Barbara Hundley > > My Personal Assistant > > Fayetteville, GA > > Tel: 678-817-6805 > > Fax: 678-884-8186 > > <http://www.my-personal-assist.com> www.my-personal-assist.com > > _____ > > From: [mailto: ] On Behalf Of > kathydf47 > Sent: Sunday, April 15, 2007 6:30 AM > > Subject: [ ] SSDI & cognitive impairment > > > > Good morning, > > I applied for SSDI due to cognitive impairment and fatigue, and I've > just been denied. I scored poorly on the cognitive testing, but > apparently not poorly enough to satisfy them. > > I'm appalled by this. If SSDI is not for a 60 year old woman with > severe side effects due to Gleevec therapy for leukemia, who is it for? > > I know that many of you have been approved for SSDI -- and some have > been approved due to these same side effects -- so I'm asking for > help. Any suggestions for my reconsideration phase of the the appeal? > > Do any of you know of any data to support cognitive impairment from > gleevec therapy? I'm told SS likes data. I've found data re chemo > brain in general, but nothing specific to gleevec. > > Thanks for any help/suggestions. > > peace, > Kathy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 Hi Tracey -- thanks for your reply and for doing another search. If you find anything promising, let me know. peace, Kathy > > > > Good morning, > > > > I applied for SSDI due to cognitive impairment and fatigue, and I've > > just been denied. I scored poorly on the cognitive testing, but > > apparently not poorly enough to satisfy them. > > > > I'm appalled by this. If SSDI is not for a 60 year old woman with > > severe side effects due to Gleevec therapy for leukemia, who is it > for? > > > > I know that many of you have been approved for SSDI -- and some have > > been approved due to these same side effects -- so I'm asking for > > help. Any suggestions for my reconsideration phase of the the > appeal? > > > > Do any of you know of any data to support cognitive impairment from > > gleevec therapy? I'm told SS likes data. I've found data re > chemo > > brain in general, but nothing specific to gleevec. > > > > Thanks for any help/suggestions. > > > > peace, > > Kathy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 Hey all: It has been a while since I have written. I went ahead with my BMT and tomorrow will be 60 days post transplant. Can't say it is an easy road. But I am doing well, on schedule with where I should be. The BCR/ABL came back neg. last week. They did a Chimerism test, this test checks the white cell count for the donor cells. My myloid counts were 100% donor and the lymphoid counts were 54% donor cells. So the cells are doing their thing and coming in. It was a MUD transplant. I know I have a long way to go. I also am trying to crack the SSDI Nut. I had to apply by my caregiver running the paperwork to the social security office, I did paperwork on line, and also a phone interview. I was told to qualify you had to be off work at least a year and one day. Also was told I had a 5 month wait period. My disability started in Feb. so I was told it would be proactive to the Feb. off date. I live in Atlanta and the caseworker said the paperwork will be sent to a team of doctors that review it in Stone Mountain, GA. and I should have an answer in 8 weeks. I don't know if it will be a different response being as I am in the process of the transplant instead of on a maintenance medication. I don't envy you, I have been there, Gleevec was not a picnic. Would I have liked to stay in remission and on the Gleevec, probably. Sprycel was not the answer either. I am hoping for the best with the BMT and plan to survive and thrive. Unfortunately I probably will be off the full year. I would rather go back to work than be on SSDI but I decided that I would rather take the chance to be healthy again, without the Gleevec or Sprycel. I am seeing people at my clinic that get healthy again, it's encourging. Good luck to all and I'll let you know how the BMT comes along and my results with the social security application. Therese Stone kathydf47 <kathydf47@...> wrote: Good morning, I applied for SSDI due to cognitive impairment and fatigue, and I've just been denied. I scored poorly on the cognitive testing, but apparently not poorly enough to satisfy them. I'm appalled by this. If SSDI is not for a 60 year old woman with severe side effects due to Gleevec therapy for leukemia, who is it for? I know that many of you have been approved for SSDI -- and some have been approved due to these same side effects -- so I'm asking for help. Any suggestions for my reconsideration phase of the the appeal? Do any of you know of any data to support cognitive impairment from gleevec therapy? I'm told SS likes data. I've found data re chemo brain in general, but nothing specific to gleevec. Thanks for any help/suggestions. peace, Kathy --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 > there are numerous articles out there showing that Gleevec can't pass the > blood brain barrier so it's hard to argue cognitive effects of a drug that > doesn't even reach the brain but we know from all the list members who > complain of the exact same side effects that this impairment is indeed real, > even if we can't find any articles to support it. Hi Kathy and Tracey, When I first started IM I was relieved to hear that it didn't cross the blood brain barrier (BBB), assuming it would therefore have no central nervous system effects. Since I'm definitely sleepier and somewhat fuzzier- headed when I'm on the drug compared to when I'm off it, I've though a lot (when I felt able to do so!) about that reasoning, and have concluded that it's bogus: drugs that don't cross into the brain can still interfere with its functioning by altering the metabolism of other substances that do cross the BBB. For example magnesium (Mg++) , an electrolyte which readily crosses the BBB and which effects energy and alertness, is found to be low in many patients - though, granted, it is excessive Mg++, rather than too little, which is associated with lassitude. I'm unaware of IM-induced changes in other commonly measured blood chemistries, but there are many chemicals in the blood that we don't routinely monitor; even minor changes in some of these could effect brain functioning over time. Cheers, R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Dear , I found your post very interesting. I'm not a doctor, chemist or biologist, so I'm not qualified to evaluate the BBB arguments, but your post makes sense to me. Like Kathy, with whom I've corresponded a bit, I've experienced definite cognitive side effects -- memory loss, impaired focus/concentration. (To all who've heard my story a bazillion times, my apologies. No wisecracks, Matt.) In this regard, I note that Novartis' Gleevec insert lists memory loss as a potential side effect -- it's listed as either " rare " or " unusual, " or something like that, but Novartis certainly acknowledges it. Anyway, thanks for your post. Warm regards. > > > there are numerous articles out there showing that Gleevec can't pass the > > blood brain barrier so it's hard to argue cognitive effects of a drug that > > doesn't even reach the brain but we know from all the list members who > > complain of the exact same side effects that this impairment is indeed real, > > even if we can't find any articles to support it. > > Hi Kathy and Tracey, > > When I first started IM I was relieved to hear that it didn't cross the > blood brain barrier (BBB), assuming it would therefore have no central > nervous system effects. Since I'm definitely sleepier and somewhat fuzzier- > headed when I'm on the drug compared to when I'm off it, I've though a lot > (when I felt able to do so!) about that reasoning, and have concluded that > it's bogus: drugs that don't cross into the brain can still interfere with > its functioning by altering the metabolism of other substances that do cross > the BBB. For example magnesium (Mg++) , an electrolyte which readily crosses > the BBB and which effects energy and alertness, is found to be low in many > patients - though, granted, it is excessive Mg++, rather than too little, > which is associated with lassitude. I'm unaware of IM-induced changes in > other commonly measured blood chemistries, but there are many chemicals in > the blood that we don't routinely monitor; even minor changes in some of > these could effect brain functioning over time. > > Cheers, > > R > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 No wisecracks from me. I have forgotten who you are already. For me, I find that my memory is more like swiss cheese. I either remember it completely, or have no recollection. Someone will come up to me and thank me for something I said to them, but I will have no memory of speaking with them at all. However, if I do remember, I will remember just about every detail of the conversation. It is disconcerting sometimes. Sincerely, Matt ville, Florida Dx January of 2005 Gleevec since March of 2005 Treated at MD Father of 3 In a message dated 4/16/2007 11:03:44 P.M. Eastern Standard Time, deh12@... writes: Dear , I found your post very interesting. I'm not a doctor, chemist or biologist, so I'm not qualified to evaluate the BBB arguments, but your post makes sense to me. Like Kathy, with whom I've corresponded a bit, I've experienced definite cognitive side effects -- memory loss, impaired focus/concentrationfocus/concentration<WBR>. (To all who've heard m times, my apologies. No wisecracks, Matt.) In this regard, I note that Novartis' Gleevec insert lists memory loss as a potential side effect -- it's listed as either " rare " or " unusual, " or something like that, but Novartis certainly acknowledges it. Anyway, thanks for your post. Warm regards. > > > there are numerous articles out there showing that Gleevec can't pass the > > blood brain barrier so it's hard to argue cognitive effects of a drug that > > doesn't even reach the brain but we know from all the list members who > > complain of the exact same side effects that this impairment is indeed real, > > even if we can't find any articles to support it. > > Hi Kathy and Tracey, > > When I first started IM I was relieved to hear that it didn't cross the > blood brain barrier (BBB), assuming it would therefore have no central > nervous system effects. Since I'm definitely sleepier and somewhat fuzzier- > headed when I'm on the drug compared to when I'm off it, I've though a lot > (when I felt able to do so!) about that reasoning, and have concluded that > it's bogus: drugs that don't cross into the brain can still interfere with > its functioning by altering the metabolism of other substances that do cross > the BBB. For example magnesium (Mg++) , an electrolyte which readily crosses > the BBB and which effects energy and alertness, is found to be low in many > patients - though, granted, it is excessive Mg++, rather than too little, > which is associated with lassitude. I'm unaware of IM-induced changes in > other commonly measured blood chemistries, but there are many chemicals in > the blood that we don't routinely monitor; even minor changes in some of > these could effect brain functioning over time. > > Cheers, > > R > ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 I have to agree with Matt. My memory sucks! But I can remember some things that happened 30-40 years ago. My wife will be saying something and when I ask about it she tells me she told me about in the past few days! I always had a good memory, being a salesman for over 30 years that was almost a requisite. Now I get very frustrated when I can't remember something. I think it really effects my short term memory much more than the long term, of course I might not be remembering that right. 8-) Terry Mount Pearl Newfoundland Canada Dx Oct. 2003 Started Gleevec Feb. 2004 > > > > > there are numerous articles out there showing that Gleevec can't > pass the > > > blood brain barrier so it's hard to argue cognitive effects of a > drug that > > > doesn't even reach the brain but we know from all the list > members who > > > complain of the exact same side effects that this impairment is > indeed real, > > > even if we can't find any articles to support it. > > > > Hi Kathy and Tracey, > > > > When I first started IM I was relieved to hear that it didn't > cross the > > blood brain barrier (BBB), assuming it would therefore have no > central > > nervous system effects. Since I'm definitely sleepier and > somewhat fuzzier- > > headed when I'm on the drug compared to when I'm off it, I've > though a lot > > (when I felt able to do so!) about that reasoning, and have > concluded that > > it's bogus: drugs that don't cross into the brain can still > interfere with > > its functioning by altering the metabolism of other substances > that do cross > > the BBB. For example magnesium (Mg++) , an electrolyte which > readily crosses > > the BBB and which effects energy and alertness, is found to be low > in many > > patients - though, granted, it is excessive Mg++, rather than too > little, > > which is associated with lassitude. I'm unaware of IM-induced > changes in > > other commonly measured blood chemistries, but there are many > chemicals in > > the blood that we don't routinely monitor; even minor changes in > some of > > these could effect brain functioning over time. > > > > Cheers, > > > > R > > > > > > > > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Hey Therese, I will be thinking of you and hoping you continue to do well post-transplant! :} Re: [ ] SSDI & cognitive impairment Hey all: It has been a while since I have written. I went ahead with my BMT and tomorrow will be 60 days post transplant. Can't say it is an easy road. But I am doing well, on schedule with where I should be. The BCR/ABL came back neg. last week. They did a Chimerism test, this test checks the white cell count for the donor cells. My myloid counts were 100% donor and the lymphoid counts were 54% donor cells. So the cells are doing their thing and coming in. It was a MUD transplant. I know I have a long way to go. I also am trying to crack the SSDI Nut. I had to apply by my caregiver running the paperwork to the social security office, I did paperwork on line, and also a phone interview. I was told to qualify you had to be off work at least a year and one day. Also was told I had a 5 month wait period. My disability started in Feb. so I was told it would be proactive to the Feb. off date. I live in Atlanta and the caseworker said the paperwork will be sent to a team of doctors that review it in Stone Mountain, GA. and I should have an answer in 8 weeks. I don't know if it will be a different response being as I am in the process of the transplant instead of on a maintenance medication. I don't envy you, I have been there, Gleevec was not a picnic. Would I have liked to stay in remission and on the Gleevec, probably. Sprycel was not the answer either. I am hoping for the best with the BMT and plan to survive and thrive. Unfortunately I probably will be off the full year. I would rather go back to work than be on SSDI but I decided that I would rather take the chance to be healthy again, without the Gleevec or Sprycel. I am seeing people at my clinic that get healthy again, it's encourging. Good luck to all and I'll let you know how the BMT comes along and my results with the social security application. Therese Stone kathydf47 <kathydf47 (DOT) com> wrote: Good morning, I applied for SSDI due to cognitive impairment and fatigue, and I've just been denied. I scored poorly on the cognitive testing, but apparently not poorly enough to satisfy them. I'm appalled by this. If SSDI is not for a 60 year old woman with severe side effects due to Gleevec therapy for leukemia, who is it for? I know that many of you have been approved for SSDI -- and some have been approved due to these same side effects -- so I'm asking for help. Any suggestions for my reconsideration phase of the the appeal? Do any of you know of any data to support cognitive impairment from gleevec therapy? I'm told SS likes data. I've found data re chemo brain in general, but nothing specific to gleevec. Thanks for any help/suggestions. peace, Kathy ------------ --------- --------- --- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Kathy, I'm not sure if it's true but I heard that it's nearly impossible to get SSDI for CML without hiring a lawyer. Sad but true. :{ [ ] SSDI & cognitive impairment Good morning, I applied for SSDI due to cognitive impairment and fatigue, and I've just been denied. I scored poorly on the cognitive testing, but apparently not poorly enough to satisfy them. I'm appalled by this. If SSDI is not for a 60 year old woman with severe side effects due to Gleevec therapy for leukemia, who is it for? I know that many of you have been approved for SSDI -- and some have been approved due to these same side effects -- so I'm asking for help. Any suggestions for my reconsideration phase of the the appeal? Do any of you know of any data to support cognitive impairment from gleevec therapy? I'm told SS likes data. I've found data re chemo brain in general, but nothing specific to gleevec. Thanks for any help/suggestions. peace, Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 : Thanks for the good thoughts! I'll update as it goes on. I finally have the energy to use my e-mail. Regards, Therese " lunaemica@... " <lunaemica@...> wrote: Hey Therese, I will be thinking of you and hoping you continue to do well post-transplant! :} Re: [ ] SSDI & cognitive impairment Hey all: It has been a while since I have written. I went ahead with my BMT and tomorrow will be 60 days post transplant. Can't say it is an easy road. But I am doing well, on schedule with where I should be. The BCR/ABL came back neg. last week. They did a Chimerism test, this test checks the white cell count for the donor cells. My myloid counts were 100% donor and the lymphoid counts were 54% donor cells. So the cells are doing their thing and coming in. It was a MUD transplant. I know I have a long way to go. I also am trying to crack the SSDI Nut. I had to apply by my caregiver running the paperwork to the social security office, I did paperwork on line, and also a phone interview. I was told to qualify you had to be off work at least a year and one day. Also was told I had a 5 month wait period. My disability started in Feb. so I was told it would be proactive to the Feb. off date. I live in Atlanta and the caseworker said the paperwork will be sent to a team of doctors that review it in Stone Mountain, GA. and I should have an answer in 8 weeks. I don't know if it will be a different response being as I am in the process of the transplant instead of on a maintenance medication. I don't envy you, I have been there, Gleevec was not a picnic. Would I have liked to stay in remission and on the Gleevec, probably. Sprycel was not the answer either. I am hoping for the best with the BMT and plan to survive and thrive. Unfortunately I probably will be off the full year. I would rather go back to work than be on SSDI but I decided that I would rather take the chance to be healthy again, without the Gleevec or Sprycel. I am seeing people at my clinic that get healthy again, it's encourging. Good luck to all and I'll let you know how the BMT comes along and my results with the social security application. Therese Stone kathydf47 <kathydf47 (DOT) com> wrote: Good morning, I applied for SSDI due to cognitive impairment and fatigue, and I've just been denied. I scored poorly on the cognitive testing, but apparently not poorly enough to satisfy them. I'm appalled by this. If SSDI is not for a 60 year old woman with severe side effects due to Gleevec therapy for leukemia, who is it for? I know that many of you have been approved for SSDI -- and some have been approved due to these same side effects -- so I'm asking for help. Any suggestions for my reconsideration phase of the the appeal? Do any of you know of any data to support cognitive impairment from gleevec therapy? I'm told SS likes data. I've found data re chemo brain in general, but nothing specific to gleevec. Thanks for any help/suggestions. peace, Kathy ------------ --------- --------- --- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 glad to hear you back online Therese! [kidme2003@...] wrote: : Thanks for the good thoughts! I'll update as it goes on. I finally have the energy to use my e-mail. Regards, Therese " lunaemica@... " <lunaemica@...> wrote: Hey Therese, I will be thinking of you and hoping you continue to do well post-transplant! :} Re: [ ] SSDI & cognitive impairment Hey all: It has been a while since I have written. I went ahead with my BMT and tomorrow will be 60 days post transplant. Can't say it is an easy road. But I am doing well, on schedule with where I should be. The BCR/ABL came back neg. last week. They did a Chimerism test, this test checks the white cell count for the donor cells. My myloid counts were 100% donor and the lymphoid counts were 54% donor cells. So the cells are doing their thing and coming in. It was a MUD transplant. I know I have a long way to go. I also am trying to crack the SSDI Nut. I had to apply by my caregiver running the paperwork to the social security office, I did paperwork on line, and also a phone interview. I was told to qualify you had to be off work at least a year and one day. Also was told I had a 5 month wait period. My disability started in Feb. so I was told it would be proactive to the Feb. off date. I live in Atlanta and the caseworker said the paperwork will be sent to a team of doctors that review it in Stone Mountain, GA. and I should have an answer in 8 weeks. I don't know if it will be a different response being as I am in the process of the transplant instead of on a maintenance medication. I don't envy you, I have been there, Gleevec was not a picnic. Would I have liked to stay in remission and on the Gleevec, probably. Sprycel was not the answer either. I am hoping for the best with the BMT and plan to survive and thrive. Unfortunately I probably will be off the full year. I would rather go back to work than be on SSDI but I decided that I would rather take the chance to be healthy again, without the Gleevec or Sprycel. I am seeing people at my clinic that get healthy again, it's encourging. Good luck to all and I'll let you know how the BMT comes along and my results with the social security application. Therese Stone kathydf47 <kathydf47 (DOT) com> wrote: Good morning, I applied for SSDI due to cognitive impairment and fatigue, and I've just been denied. I scored poorly on the cognitive testing, but apparently not poorly enough to satisfy them. I'm appalled by this. If SSDI is not for a 60 year old woman with severe side effects due to Gleevec therapy for leukemia, who is it for? I know that many of you have been approved for SSDI -- and some have been approved due to these same side effects -- so I'm asking for help. Any suggestions for my reconsideration phase of the the appeal? Do any of you know of any data to support cognitive impairment from gleevec therapy? I'm told SS likes data. I've found data re chemo brain in general, but nothing specific to gleevec. Thanks for any help/suggestions. peace, Kathy ------------ --------- --------- --- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Autos. Quote Link to comment Share on other sites More sharing options...
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