Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Hi Steve, We went through the same thing with my 19 year old son and were denied many times. I finally had applied for congressional help. My son was finally approved for Social Security also I researched for a social security attorney best of luck I am not sure what state you live in we are outside of Cleveland. Sincerely, Donna K ---- Steve micro_choice@...> wrote: > > Hi all > > Because I'm physically and emotionally exhausted, rather than re-type I've > pasted below what I sent elsewhere. My attempt to get SSDI is now in its > 18th month...and I'm not holding my breath. > > Steve D. > > ------------------------------------------------------------------ > > Today I received a letter from SSA saying that they had denied my > reconsideration for SSDI. > > I have engaged an attorney specializing in disability claims: ne > Soprano [...]. I met with her a couple of weeks ago, gave her quite a bit of > info, and will be meeting again (now that this denial has occurred) to give > her some more info and review the strategy. She will be working on the usual > contingency basis. > > From what I understand from her, and elsewhere, it is normal for unusual > cases to be denied at the initial and second (reconsideration) level, > because they both are usually based on the so-called " presumptive " list of > diseases. According to Ms. Soprano, and the details of the letter, there is > plenty of basis for successful appeal at the next " judiciary " level, where > there will be an in-person hearing with an administrative law judge (ALJ). > The request for this will be filed ASAP. The grounds for appeal are: > > 1) They (Disability Determination Services, DDS) apparently did not know or > consider the usual symptoms of MSL (despite my providing same...seems they > routinely ignore what a patient provides, at this level). > > 2) They didn't receive all the records that they either requested, or should > have requested, based on my app. > > 3) There have been new tests further confirming the MSL diagnosis and > supporting my reported symptoms, that they either didn't yet receive or are > still pending. > > 4) The denial says among other things that I can stand for most of the day, > yet they never actually tested for that in any way, and it's not true. > > 5) THEY ordered a Pulmonary Function Test (PFT), which got delayed by the > testing hospital they selected, yet they ruled anyway without waiting for > the test result. > > 6) They seemed to have ignored the very important letter from Dr. Toran, > detailing my diagnosis, some test results, and symptoms. Again, I enclosed > this but they should have either used it or waited for records from Dr. > Toran which would have contained same. > > 7) The denial says among other things that I have been evaluated and TREATED > for MSL. In fact, I have not been treated. There is no treatment, other than > a couple of over-the-counter vitamin-like supplements which are not > generally prescribed (and certainly weren't, for me). It is well documented > in the medical literature, which they of course didn't consider, that MSL > and its neurological symptoms don't go away but in fact always gets worse. > The two surgeries I've had are " helpful " in slowing the progress, but can't > make it go away. > > 8) MSL is EXTREMELY rare, and is typically known to be present and disabling > long before a formal diagnosis (due to its unusual characteristics). I have > been reporting (to my PPO doc) extreme fatigue, chronic severe headaches, > and of course the lipomas themselves (two surgeons didn't identify the MSL), > for many years. > > Re the PFT above, I was ordered to appear on 2/18/05 for a doctor's exam and > PFT. At the doc's office that day they said they don't make the PFT > appointment (at the hospital down the street) until the person shows up, and > they couldn't schedule it until 3/10/05. When I went for that test, they > said that the pulmonologist who would write the report from the raw data was > on vacation until 3/21/05. For unknown reasons, the report still hasn't been > received at DDS, as far as I know. > > Re the " still pending " test above, this is a battery of blood tests that > looks for a mutation in mitochondrial DNA (mtDNA). This test is very > specialized (and expensive) and takes a very long time to get results. What > with delays getting the appointment, waiting for results to come back, and > then more delays getting the results from Dr. Cros' office at MGH, the blood > draw was done on 12/13/04 and I received the results on 3/4/05. Incredibly, > the testing facility in Worcester had performed and prepared a nine-page > report for the WRONG TEST (and, typically, no one noticed this until I > pointed it out). So it's now being repeated, and results are expected > 4/11/05. Of course, I wouldn't count on that date, but that's what I've been > told. I understand that about 15% of MSL patients show one or two particular > mtDNA mutations (MERRF or MELAS), so a negative is not proof that I don't > have it, but a positive is proof that I do. > > Just by the way, I have applied for MassHealth and MDA (Muscular Dystrophy > Assoc.) benefits. I was turned down initially by MassHealth because of the > delays in getting SSDI approval AND my wife's income at the time. I've > re-applied because my wife is now unemployed. The MDA benefits may cover the > cost of visiting an MDA clinic (there's one at MGH) for various services. > > Ms. Soprano thinks my case is likely to succeed (given that I have an usual > illness but a lot of good supporting documents and test results), but who > knows? > > Regards > [...] > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Good luck Steve. I hope it all works out for you. Steve wrote: >Hi all > >Because I'm physically and emotionally exhausted, rather than re-type I've >pasted below what I sent elsewhere. My attempt to get SSDI is now in its >18th month...and I'm not holding my breath. > >Steve D. > >------------------------------------------------------------------ > >Today I received a letter from SSA saying that they had denied my >reconsideration for SSDI. > >I have engaged an attorney specializing in disability claims: ne >Soprano [...]. I met with her a couple of weeks ago, gave her quite a bit of >info, and will be meeting again (now that this denial has occurred) to give >her some more info and review the strategy. She will be working on the usual >contingency basis. > >>From what I understand from her, and elsewhere, it is normal for unusual >cases to be denied at the initial and second (reconsideration) level, >because they both are usually based on the so-called " presumptive " list of >diseases. According to Ms. Soprano, and the details of the letter, there is >plenty of basis for successful appeal at the next " judiciary " level, where >there will be an in-person hearing with an administrative law judge (ALJ). >The request for this will be filed ASAP. The grounds for appeal are: > >1) They (Disability Determination Services, DDS) apparently did not know or >consider the usual symptoms of MSL (despite my providing same...seems they >routinely ignore what a patient provides, at this level). > >2) They didn't receive all the records that they either requested, or should >have requested, based on my app. > >3) There have been new tests further confirming the MSL diagnosis and >supporting my reported symptoms, that they either didn't yet receive or are >still pending. > >4) The denial says among other things that I can stand for most of the day, >yet they never actually tested for that in any way, and it's not true. > >5) THEY ordered a Pulmonary Function Test (PFT), which got delayed by the >testing hospital they selected, yet they ruled anyway without waiting for >the test result. > >6) They seemed to have ignored the very important letter from Dr. Toran, >detailing my diagnosis, some test results, and symptoms. Again, I enclosed >this but they should have either used it or waited for records from Dr. >Toran which would have contained same. > >7) The denial says among other things that I have been evaluated and TREATED >for MSL. In fact, I have not been treated. There is no treatment, other than >a couple of over-the-counter vitamin-like supplements which are not >generally prescribed (and certainly weren't, for me). It is well documented >in the medical literature, which they of course didn't consider, that MSL >and its neurological symptoms don't go away but in fact always gets worse. >The two surgeries I've had are " helpful " in slowing the progress, but can't >make it go away. > >8) MSL is EXTREMELY rare, and is typically known to be present and disabling >long before a formal diagnosis (due to its unusual characteristics). I have >been reporting (to my PPO doc) extreme fatigue, chronic severe headaches, >and of course the lipomas themselves (two surgeons didn't identify the MSL), >for many years. > >Re the PFT above, I was ordered to appear on 2/18/05 for a doctor's exam and >PFT. At the doc's office that day they said they don't make the PFT >appointment (at the hospital down the street) until the person shows up, and >they couldn't schedule it until 3/10/05. When I went for that test, they >said that the pulmonologist who would write the report from the raw data was >on vacation until 3/21/05. For unknown reasons, the report still hasn't been >received at DDS, as far as I know. > >Re the " still pending " test above, this is a battery of blood tests that >looks for a mutation in mitochondrial DNA (mtDNA). This test is very >specialized (and expensive) and takes a very long time to get results. What >with delays getting the appointment, waiting for results to come back, and >then more delays getting the results from Dr. Cros' office at MGH, the blood >draw was done on 12/13/04 and I received the results on 3/4/05. Incredibly, >the testing facility in Worcester had performed and prepared a nine-page >report for the WRONG TEST (and, typically, no one noticed this until I >pointed it out). So it's now being repeated, and results are expected >4/11/05. Of course, I wouldn't count on that date, but that's what I've been >told. I understand that about 15% of MSL patients show one or two particular >mtDNA mutations (MERRF or MELAS), so a negative is not proof that I don't >have it, but a positive is proof that I do. > >Just by the way, I have applied for MassHealth and MDA (Muscular Dystrophy >Assoc.) benefits. I was turned down initially by MassHealth because of the >delays in getting SSDI approval AND my wife's income at the time. I've >re-applied because my wife is now unemployed. The MDA benefits may cover the >cost of visiting an MDA clinic (there's one at MGH) for various services. > >Ms. Soprano thinks my case is likely to succeed (given that I have an usual >illness but a lot of good supporting documents and test results), but who >knows? > >Regards >[...] > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2005 Report Share Posted March 30, 2005 My apologies to all, for my having accidentally just hit SEND and thereby relaying my entire recent digest back to the group again. POSSIBLY THE MODERATOR CAN CANCEL IT. What I really meant to say is this: I very much appreciate the words of support I have received here regarding my torturous dealings with SSDI. It is very difficult for me to remain hopeful, and I despair for my medical and financial situation. It's been downright disturbing and humiliating to me, trying to convince uncaring institutions (including my government, to whom I've paid taxes for many decades), that I really am as sick as I claim. Only recently have I had SOME support in this claim, from doctors, but they are still painfully uncooperative. I just called my " new " disability attorney, and their office told me she couldn't meet with me until after she returns from a two-week vacation that hasn't even started yet. But that probably matters little, because I was also told that their office expects around ONE YEAR wait for a court hearing, on my administrative appeal. You know, there's a large number of people in this country who have no idea this sort of thing is happening. So many people get routinely approved, sometimes with rather obscure ailments, that I just can't believe my situation. I've just about given up telling people my SSDI story, because they look at me like they don't really believe it could be so bad. And that's on top of their not necessarily believing that I really am sick at all. So that's more of why I find comfort in the stories I hear in this group. Thanks for listening. Steve D. > Date: Tue, 29 Mar 2005 14:11:26 -0500 > > Subject: Re: SSDI woes > > Hi Steve, > We went through the same thing with my 19 year old son and were denied many times. I finally had applied for congressional help. My son was finally approved for Social Security also I researched for a social security attorney best of luck I am not sure what state you live in we are outside of Cleveland. > Sincerely, > Donna K > ---- Steve micro_choice@...> wrote: > > > > Hi all > > > > Because I'm physically and emotionally exhausted, rather than re-type I've > > pasted below what I sent elsewhere. My attempt to get SSDI is now in its > > 18th month...and I'm not holding my breath. > > > > Steve D. > Quote Link to comment Share on other sites More sharing options...
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