Lerner's Office Won't Fill Out Disability Paperwork.

[Ema]

Unbelievable.

After the better part of a year of treatment and probably close to $10,000, Dr Lerner is now refusing to complete his part of the Social Security Disability review paperwork regarding my treatment with cidofovir in his office over the course of 2013 because I have not been seen in his office since Jan 2014.

I have tried to explain that the disability paperwork is for the year of 2013 when he was seeing me...not for 2014...and so he doesn't need to comment on my condition currently, but so far he is refusing to do so unless I make a 12 hour round trip up to MI for what would undoubtedly be a 10 minute appointment and a 2 hour wait in his waiting room.

Obviously losing my disability is not an option because that is also my health insurance, but a trip to MI would be unbelievably difficult for me in my current condition. I can't believe a renowned CFS doctor would put me through that stressful experience for absolutely no reason, knowing the kind of damage a crash can cause. And I can't believe any sympathetic doctor would not be supportive of retaining disability especially given how difficult it is to get in the first place for those of us with ME/CFS.

Just unbelievable amounts of stress.

So if I don't go...will he just be unsupportive of my review? I wonder how much damage that will do to my review to only have my local internist on board?

 

[alex3619]

Darn. Sorry.

 

[maryb]

Unbelievable is right.
All the money, effort etc. And the bottom line is rules is rules. No understanding, no compassion. What really do we pay them for. Just a little bit of heart would be nice.

I think you just have to make the appointment and go, its just so bad you're feeling so sick, we know how that feels, but you can't afford to lose it. Its a bad situation for sure.

 

[Wayne]

so far he is refusing to do so unless I make a 12 hour round trip up to MI...

Hi Ema, so sorry to hear you're dealing with this extreme difficulty.

Not sure if you talked with Lerner directly, or through one of his assistants, but I'm assuming the message was relayed to you by one of his assistants. If that's the case, what I would do is look for any ally in his office. Is the person who initially told you of the refusal open to discussing it in greater detail? If not, could you call and specifically ask for somebody else, who in turn may make an appeal to Dr. Lerner?

In situations like this, I always start out with the belief that this refusal is "not set in stone". I then try to calm myself as much as possible, and come up with a plan and some very precise talking points. If it doesn't succeed, give things a coupe days or more to "settle down", and then try again. Sometimes appealing to another's "better side" works better on some days than others. --- I hope this doesn't across too much as a male "fix it" thing.

All the Best!!!

Wayne

 

[*GG*]

Unbelievable.

After the better part of a year of treatment and probably close to $10,000, Dr Lerner is now refusing to complete his part of the Social Security Disability review paperwork regarding my treatment with cidofovir in his office over the course of 2013 because I have not been seen in his office since Jan 2014.

I have tried to explain that the disability paperwork is for the year of 2013 when he was seeing me...not for 2014...and so he doesn't need to comment on my condition currently, but so far he is refusing to do so unless I make a 12 hour round trip up to MI for what would undoubtedly be a 10 minute appointment and a 2 hour wait in his waiting room.

Obviously losing my disability is not an option because that is also my health insurance, but a trip to MI would be unbelievably difficult for me in my current condition. I can't believe a renowned CFS doctor would put me through that stressful experience for absolutely no reason, knowing the kind of damage a crash can cause. And I can't believe any sympathetic doctor would not be supportive of retaining disability especially given how difficult it is to get in the first place for those of us with ME/CFS.

Just unbelievable amounts of stress.

So if I don't go...will he just be unsupportive of my review? I wonder how much damage that will do to my review to only have my local internist on board?

I have been seeing my "CFS" Dr since 2008, not sure how much he believes in the illness, but he did help me get better and allowed me to continue work for years with accommodations. I stopped working a little over a year ago. Been working on getting disability. He has not been supportive in regards to certain language that my lawyer would like in the report. So I saw a new Dr about 2 weeks ago.

She was supportive and was impressed by the 2 day in a row exercise test I had done by Betsy Keller in Ithaca, NY in 2010! She is a "local" CFS Dr and only takes cash, no insurance, I don't have insurance at this time, hope to get it from my former employer with the disability, don't trust Obamacare with my info, trying to rebuild my credit. I paid nearly 500 dollars for the visit, no income, but I figured I didn't have much of a choice!

It is frustrating to deal with these Drs. He had been writing that I was disabled since/prior to 2008 because of my medical conditions! My lawyer is looking for certain language so I can sue my former employer, they put me thru a lot of shit, and turned a blind eye to lots of things that were wrong, not with me though!

GG

 

[Ema]

Not sure if you talked with Lerner directly, or through one of his assistants, but I'm assuming the message was relayed to you by one of his assistants. If that's the case, what I would do is look for any ally in his office. Is the person who initially told you of the refusal open to discussing it in greater detail? If not, could you call and specifically ask for somebody else, who in turn may make an appeal to Dr. Lerner?

In situations like this, I always start out with the belief that this refusal is "not set in stone". I then try to calm myself as much as possible, and come up with a plan and some very precise talking points. If it doesn't succeed, give things a coupe days or more to "settle down", and then try again. Sometimes appealing to another's "better side" works better on some days than others. --- I hope this doesn't across too much as a male "fix it" thing.

All the Best!!!

Wayne

Thanks, @Wayne. I'm waiting on a phone call from Lerner himself and I plan to beg.

But one of the reasons I stopped seeing him was because of how difficult he is to talk to, so I don't expect much - other than a 12 hour trip to MI.

I will keep my fingers crossed though and hope I can vent out some anger here so it doesn't come out in our conversation where it would surely be less than helpful. If he says no, I doubt anyone there can change his mind. It's very much his way or the highway on everything.

 

[Gingergrrl]

@Ema Wow, I am so surprised and sorry to hear that! It is very disappointing re: Dr. Lerner.

When I first started calling different CFS specialists, I called his office but they said I would have to be monitored by Dr. L regularly to get an anti viral so I knew it was not an option since I am on the west coast.

He sounds very rigid which is a shame b/c CFS patients are so sick and unable to travel. I agree that you should be calm and appreciative on the phone but also assertive. Explain that this is a life or death situation for you and you will compensate him for his time to fill out your forms which cover 2013 when you did see him.

Do you plan to continue as his patient? If so, can you schedule a later appt with him (to pacify him while forms being done?) and then decide if you want to keep appt or switch doctors?

I am so sorry and keep us posted.

 

[Dreambirdie]

@Ema Awful. Sorry you have to deal with this.

Here's something that might be helpful. When you fill out the paperwork here in CA and put down a treating doctor's name, then that results in the SSD office automatically sending the form to your doctor to fill out his info about your treatment. You do not have to "ask" (beg or plead) for him to do it. Not sure how it differs in the Midwest... but maybe it's the same.

I would check with your SSD office and tell them about your problem with Lerner and his refusal to cooperate with your needs. Since it is THEY who need that info, it is at least partly their responsibility to help you get it. If you know some other (local) doctor who can vouch for you that you are unable to travel, then that would add to your case notes about this issue.

Good luck with it!

 

[barbc56]

@Ema

So, so sorry. All the hoops we have to jump through when we don't have the physical/mental energy to do that. It's so overwhelming.

I just went through the same thing with not getting my papers sent in time because I was in the hospital. You would think that situations like these happen a lot when dealing with people who have chronic illnesses. Getting the situation corrected took so muchh time and effort, it was draining.


Do you have another doctor who could fill out the paperwork and include information about seeing Dr. Lerner? I'm not familiar with SSD forms but with mine you have to include a history of treatments/diagnosis since the last paperwork, so maybe another doctor would do that.

Good luck and hope things work out for you.

Barb

 

[Ema]

@Ema ou do not have to "ask" (beg or plead) for him to do it. Not sure how it differs in the Midwest... but maybe it's the same.

I would check with your SSD office and tell them about your problem with Lerner and his refusal to cooperate with your needs. Since it is THEY who need that info, it is at least partly their responsibility to help you get it. If you know some other (local) doctor who can vouch for you that you are unable to travel, then that would add to your case notes about this issue.

Good luck with it!

Thanks @Dreambirdie. I appreciate the kind words. I'm so overwhelmed by all this and feeling utterly unable to cope.

The problem is that I kind of *do* have to beg him to fill out the paperwork in a *supportive* way.

He doesn't have to fill it out at all, you're right, but how would that look to the SSD review board if one of my treating physicians, an expert in the field of CFS, refuses to support my claims of disability by CFS? I daresay it would open the door to them denying my benefits fully (or at the very least sending me to a consultative exam with a doctor fully clueless about ME/CFS) and putting me back in the situation of having to go to court again to get them reinstated. Which of course would all be more stressful than the journey to Lerner if I had to choose between two evils.

I just can't believe that Lerner would put me through this and not just write a statement that he can't comment on my current condition but that I was disabled when he saw me over the course of my treatment. It's so disheartening.

 

[Ema]

@Ema I agree that you should be calm and appreciative on the phone but also assertive. Explain that this is a life or death situation for you and you will compensate him for his time to fill out your forms which cover 2013 when you did see him.

Do you plan to continue as his patient? If so, can you schedule a later appt with him (to pacify him while forms being done?) and then decide if you want to keep appt or switch doctors?

Thanks @Gingergrrl.

He is not the type of doctor that appreciates assertiveness. At all. His attitude is straight out of the 50s. My PhD level educated mother was firmly rebuffed by him for asking questions and she found it extremely offensive.

One time he asked me why I didn't do something and I replied "Because my father forbade it" and he accepted that fully, no further questions. Like it was totally normal that a fully grown woman would have to do something because her father dictated it. It would have been funny if it hadn't been so ridiculous.

Collaboration is NOT the name of the game but I knew that going in and went along with it because I wanted to try the treatment.

I do not plan to continue as his patient at this time. The monthly visits were too draining - physically and financially - for me to continue with him. I dreaded every visit. Thankfully I have an extremely supportive local doctor that is keeping me on the antivirals instead.

 

[Gingergrrl]

@Ema, I know this will sound like a ridiculous statement but since he appears to prefer speaking with men and you report his attitude is from the 50's, can your father or husband or a male friend or even better, another male doctor, speak to him "Man to man?" I literally would never give this advice but wonder if this is needed to play his game and get you what you need? At this point since you do not plan to continue with him, we just need him to sign the papers.

If nothing works, do you have someone to go with you to your final appt to get the papers done? I agree it is better to have the papers from him than be denied and have to go back to court.

 

[Ema]

@Ema, I know this will sound like a ridiculous statement but since he appears to prefer speaking with men and you report his attitude is from the 50's, can your father or husband or a male friend or even better, another male doctor, speak to him "Man to man?" I literally would never give this advice but wonder if this is needed to play his game and get you what you need? At this point since you do not plan to continue with him, we just need him to sign the papers.

If nothing works, do you have someone to go with you to your final appt to get the papers done? I agree it is better to have the papers from him than be denied and have to go back to court.

It's a good point. I'm going to try very hard to get my dad on the phone with him when he calls back because he does respond better to men. But since I don't know when he is going to call, that may prove difficult as well. I might just have my dad call up himself.

My parents will have to take me to the final appt if it comes to that.

 

[Dreambirdie]

Thanks @Dreambirdie. I appreciate the kind words. I'm so overwhelmed by all this and feeling utterly unable to cope.

The problem is that I kind of *do* have to beg him to fill out the paperwork in a *supportive* way.

Hi Ema, I probably didn't commniicate the first part of my message clearly enough. BAD brain day.

What I was attempting to say was that SSD people will automatically send the paperwork to the doctor and require him to fill it out if he is your treating physician. At least they do that here. You might check about that.

If not, then CRAP! Get ready to make a bed to lie down in the car.

 

[Gingergrrl]

What I was attempting to say was that SSD people will automatically send the paperwork to the doctor and require him to fill it out if he is your treating physician. At least they do that here. You might check about that. If not, then CRAP! Get ready to make a bed to lie down in the car.

@Dreambirdie I did not realize that as for now I am still on a private disability plan through my employer (but will be forced to also apply for SSD in January.) Long story and don't want to get off track from Ema's post. But, in regard to what you said, if SSD automatically sends Dr. Lerner the paperwork but he refuses to fill it out b/c he has not seen Ema in person, couldn't that hurt her case? This is good for me to learn for next year as I had several doctors in 2013 and hoping I can only give the names to SSD that I choose (as some of them I am no longer seeing or know they would not be helpful.) Thanks!

 

[Dreambirdie]

@Gingergrrl @Ema This is what they do IN CALIFORNIA.
I do not know how it works elsewhere.

 

[Ema]

@Dreambirdie I did not realize that as for now I am still on a private disability plan through my employer (but will be forced to also apply for SSD in January.) Long story and don't want to get off track from Ema's post. But, in regard to what you said, if SSD automatically sends Dr. Lerner the paperwork but he refuses to fill it out b/c he has not seen Ema in person, couldn't that hurt her case? This is good for me to learn for next year as I had several doctors in 2013 and hoping I can only give the names to SSD that I choose (as some of them I am no longer seeing or know they would not be helpful.) Thanks!

@Gingergrrl, I think it will hurt my case if Dr Lerner refuses to fill out the paperwork in a supportive way. I actually think it will hurt the reputation of ME/CFS as a whole as well because they are already biased against us. I think our doctors need to take every opportunity to educate the SSD on just exactly how disabling this illness is.

I agree with @Dreambirdie that the paperwork was likely automatically generated once I listed him as a treating physician. He may or may not be able to be *forced* to comply, but do I really want him to be forced? I doubt he would write anything supportive of my claim in that case. I need him on my side which means that he gets to call the shots no matter how devastating it is for my health, apparently.

When I first applied for SSD, I only listed doctors that I knew were on my side. That wasn't an option here since they asked me to list all treating physicians for 2013 and they can compare with Medicare.

 

[Gingergrrl]

@Gingergrrl @Ema This is what they do IN CALIFORNIA. I do not know how it works elsewhere.

I live in CA so I was curious in my own case although it seems like SSD rules might be federal law? I could be wrong though.

Also @Ema- I have been thinking about you and your situation all day and have two more ideas. One, can you do a Skype consult with Dr. Lerner so he "sees" you and then do the blood work that he orders at a local lab? Or, can you hire an attorney (if you don't already have one?) Maybe if Dr. L gets a call from your attorney, he will be more likely to comply.

 

[minkeygirl]

SSD is a federal program so it's most likely the same in CA or where you are. So if they send him paperwork like @Dreambirdie says, then I don't see how he can refuse to fill it out.

 

[Ema]

SSD is a federal program so it's most likely the same in CA or where you are. So if they send him paperwork like @Dreambirdie says, then I don't see how he can refuse to fill it out.

If your own doctor refuses to support you on paper, then you are just left to the mercies of the doctors that SSD hires to do their exams.

This time around the burden is on them to prove that I am recovered and not the other way around. But it still sucks.