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Doctors Switch Opinions?


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#1 platy

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Posted 09 October 2012 - 11:09 AM

After trying and trying to work to no avail, I finally applied for SSDI this year. I didn't want to, but I couldn't work anymore. To this day, I suffer from tremendous guilt about not working. The only reason I'm not out on the street is because my mother has temporarily taken me in.

The welfare programs here keep losing my paperwork. With all the talk in this country about people taking advantage of the system (which I'm sure there are), I don't see how anyone actually manages to get on those programs. I'm now dependent on my church's food pantry....

Since my diagnosis, my sleep specialist and my primary doctor have been incredibly supportive. The sleep specialist wrote a letter for me back in January so I could get my lawyer.

Something's changed over the past four months. I have no idea what happened. Without going on and on about trying to get my doctors to fill out and send back the questionnaire to the lawyers, I found out today that my primary- the very same one who supported my decision to start all this back in January- told my case worker on the phone that he wouldn't fill out the paperwork because he didn't think I was disabled. WTH???

My sleep specialist keeps sending them the paperwork back blank! The only thing I could think of is that he and his secretaries have developed some weird PTSD from trying to get me Xyrem earlier this year, which was a royal pain because I'm on Medicaid. But then that story got convoluted because I enlisted the help of Patient Advocate Foundation. When they called Medicaid, the Medicaid pharmacy said that my sleep specialist had refused to call them back and cooperate.

Today, after learning all these details about my primary and sleep specialist, I decided enough. I'm going to find a way to switch doctors. All of this, combined with how young I am, essentially my chances of winning my disability case in December are close to zero.

Has anyone experienced anything like this? Why would my doctors be 100% on board supporting me, until they were asked to fill out paperwork by the lawyer? I wish they would have told me they didn't think I was disabled, so I could have realized I needed to switch doctors months ago.

#2 DeathRabbit

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Posted 09 October 2012 - 03:17 PM

After trying and trying to work to no avail, I finally applied for SSDI this year. I didn't want to, but I couldn't work anymore. To this day, I suffer from tremendous guilt about not working. The only reason I'm not out on the street is because my mother has temporarily taken me in.

The welfare programs here keep losing my paperwork. With all the talk in this country about people taking advantage of the system (which I'm sure there are), I don't see how anyone actually manages to get on those programs. I'm now dependent on my church's food pantry....

Since my diagnosis, my sleep specialist and my primary doctor have been incredibly supportive. The sleep specialist wrote a letter for me back in January so I could get my lawyer.

Something's changed over the past four months. I have no idea what happened. Without going on and on about trying to get my doctors to fill out and send back the questionnaire to the lawyers, I found out today that my primary- the very same one who supported my decision to start all this back in January- told my case worker on the phone that he wouldn't fill out the paperwork because he didn't think I was disabled. WTH???

My sleep specialist keeps sending them the paperwork back blank! The only thing I could think of is that he and his secretaries have developed some weird PTSD from trying to get me Xyrem earlier this year, which was a royal pain because I'm on Medicaid. But then that story got convoluted because I enlisted the help of Patient Advocate Foundation. When they called Medicaid, the Medicaid pharmacy said that my sleep specialist had refused to call them back and cooperate.

Today, after learning all these details about my primary and sleep specialist, I decided enough. I'm going to find a way to switch doctors. All of this, combined with how young I am, essentially my chances of winning my disability case in December are close to zero.

Has anyone experienced anything like this? Why would my doctors be 100% on board supporting me, until they were asked to fill out paperwork by the lawyer? I wish they would have told me they didn't think I was disabled, so I could have realized I needed to switch doctors months ago.

Could be maybe they just weren't aware of the case law. Narcolepsy's a rare disease, so maybe they'd never been involved in that process before and they balked when they saw the legalese and maybe decided you didn't fit the bill after all. Or maybe your doctor is a two-faced prick. It could go either way, hard to tell. Sorry this has been such a set back in your life. I know it's a blow to the ego to have to head back home. But noone would ask questions about it if your leg fell off. N shouldn't be any different. A part of your brain has been destroyed. There's no amount of good work ethic that can fix that. So don't feel bad for doing what you had to do.

#3 platy

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Posted 11 October 2012 - 09:37 AM

Could be maybe they just weren't aware of the case law. Narcolepsy's a rare disease, so maybe they'd never been involved in that process before and they balked when they saw the legalese and maybe decided you didn't fit the bill after all. Or maybe your doctor is a two-faced prick. It could go either way, hard to tell. Sorry this has been such a set back in your life. I know it's a blow to the ego to have to head back home. But noone would ask questions about it if your leg fell off. N shouldn't be any different. A part of your brain has been destroyed. There's no amount of good work ethic that can fix that. So don't feel bad for doing what you had to do.



After talking with a few other people, I think it's a combination of what you mentioned and a few other factors. *Sigh*

It looks like there's about 100% chance I won't be getting disability in December, so I'm compiling a list of WAH jobs that are actually legit.

Thanks for the reminder, i.e. leg falling off comment. I'm torn between recognizing that truth and being surrounded by people who will not recognize that truth. But I have to make money somehow...

#4 DeathRabbit

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Posted 11 October 2012 - 10:44 AM

After talking with a few other people, I think it's a combination of what you mentioned and a few other factors. *Sigh*

It looks like there's about 100% chance I won't be getting disability in December, so I'm compiling a list of WAH jobs that are actually legit.

Thanks for the reminder, i.e. leg falling off comment. I'm torn between recognizing that truth and being surrounded by people who will not recognize that truth. But I have to make money somehow...


You always have the option of resorting to a life of crime! But seriously, try working night shifts perhaps. Many narcoleptics, such as myself, have an inverted circadian rhythm. Unfortunately, night work is not an option for me.