I Think A Psychiatric Expert Got Me Disability

[MTRJ75]

A couple of months after my first hearing in November, I got a notice of a second hearing. My lawyer said that this is unconventional, but better than a denial. He had also learned that the medical expert they wanted to bring in was psychiatric. My initial reaction was frustration, but it turned out be the turning point in the case, I believe. 

The judge questioned the medical expert about something one of the doctors I'd seen (I don't know which one) had put in my records about a somatoform disorder. I got extremely lucky that this psychiatric expert actually understood the condition. He told the judge that POTS and autonomic neuropathy can cause similar or even the same symptoms as anxiety and cause depression, but these are definitely physical illnesses. He was adamant with each question asked that it would be outside of his expertise to give an opinion because I had a physical, not psychiatric illness. I don't think I could have asked for a more favorable testimonial. 

The judge left off saying that this was difficult for her too because this is not the type of case she's used to dealing with, but we'll receive her decision by mail soon. This week, I got a phone call that SS needed to make an appointment with me to discuss my finances. When I asked why, they said because I was approved for full benefits (I didn't even know there were partial approval options too until the lawyer's office told me). 

So this is the best news I've had in a while. Now I just need to get well enough to work on a more consistent basis and get rid of it.  

[Guest KiminOrlando]

Congratulations. Yes, you got very lucky that the expert understood what dysautonomia was, how it works and stuck to his guns that it was outside of his area of expertise. Getting stable finances and insurance is the first step in being able to rest and start recovering some of your life. It will not be quick. Give yourself time and grace. 

[Pistol]

@MTRJ75 - Congratulations! Yes - I too found that they ( the SSI people ) don;t have a clue what to do with dysautonomia. Can you blame them - if even the medical community has no clue? I had an in-person hearing with a judge that initially was quite skeptical, but once I explained the symptoms and the reality of POTS he approved me fully on the spot. I think what they don;t understand is that we are unable to follow any schedule, since our symptoms pretty much dictate our schedules 😒.

I have found - from other posts on this forum - that psychiatrists can be quite helpful in diagnosing dysautonomia, simply by ruling out psychiatric causes. They can see the difference between anxiety/depression/somatic disorder vs a true physical reason for the same symptoms. I was evaluated extensively twice by a neuro-psychologist ( for cognitive decline from POTS ) and both times she was adamant that the symptoms were physical rather than psychological, and that the anxiety/nervousness was a result of the illness rather than the reason. 

9 hours ago, MTRJ75 said:

So this is the best news I've had in a while. Now I just need to get well enough to work on a more consistent basis and get rid of it.  

Huh! I admire your determination! 

[cmep37]

Congratulations @MTRJ75 - it is such a weight off your mind when you don't have money worries looming over you.  

I also found a clinical psychologist really helpful - it was long before I had a dysautonomia diagnosis and I was really grasping at straws - every doctor was telling me it was depression or anxiety so I asked to be referred to a clinical pysch to see if he could help.  He listened to what I had to say, asked a lot of questions, did a couple of assessments and told me he hadn't a clue what was wrong with me but he was 100% certain it wasn't depression or anxiety and he believed it had a physical not a psychological cause.  It was great because after I saw him I could tell any doctor that a specialist in mental health said it wasn't a mental health issue and I do think I was taken more seriously as a result.  

[Sarah Tee]

@MTRJ75, that is such great news. Thank goodness you got a psychiatrist that knew their stuff!

I am so glad you will get some financial help, and I am also hopeful that all kinds of doctors are getting dysautonomia, POTS, anxiety and somatic illnesses clear in their minds so that anyone suffering from any of these can get the right diagnosis and help.

[MTRJ75]

Finally received and read the 6 page decision. Apparently it was the IME (Independent Medical Exam) that wrote that I was fine and that my symptoms were "somatoform" and a result of an "adjustment disorder". The judge, not having any previous experience, must have initially bought in. 

It was in fact three things that "persuaded" her": 

- During the initial telephone hearing, the occupational expert identified a plethora of sedentary jobs someone in my position could perform. My lawyer asked one question about how many of those jobs someone who couldn't consistently sit normally because of blood pooling could perform. The answer: zero. 

- My lawyer sent my neurologist a detailed questionnaire which he considerately filled out specifically on my abilities and inabilities. 

- The fact that there are complaints to several doctors going back several years before I even applied. 

- The testimonial mentioned in the OP of the independent psychologist, who understood the condition and convinced her this was a physical illness. 

I also received a letter from my lawyer with further guidance that I should continue to keep in contact with doctors and vocalize my complaints and symptoms, even if I don't believe they can help me. 

The reason is, at the end of the decision, the judge wrote: "Medical improvement is expected with appropriate treatment.' Consequently, a continuing disability review is recommended in 12 months." 

Obviously, I'm thrilled that they've found a doctor who can improve my condition. But they are going to need ongoing records from doctors visits and any kind of complaints I might have. 

 

[Guest KiminOrlando]

In the meantime, seek out doctors knowledgeable in dysautonomia to get additional documentation. I was re-reviewed and had to re-qualify. They will send out routine paperwork every year or two, but a real review is HUGE. It is like filling out the paperwork all over again, this time without an attorney. I re-qualified, but it was very stressful. Be sure to read and understand the reasons you were approved so you can stress the continuation of those things in addition to any new issues. Changing issues would be a new approval, which would be harder.

Photocopy everything you send them and try to use very similar explanations. Everything is so different from day to day with us that we may stress one thing one day and something else another. This muddles the issue. Keep continuity. Our situation is so complicated even doctors don't understand it well.

[Pistol]

@MTRJ75 - I agree with @KiminOrlando. A calendar is very important! I was reviewed as well and had to call around to find out the dates of appointments and hospitalizations.n my case they sent me a form to fill out that sked about appointments, symptoms etc. It states that they may decide to involve my doctors in the re-approval process, however after receiving my returned form they said it was not necessary to involve my docs and I got re-approved. I was approved for SSDI in 2016 and have only been re-evaluated once so far. 

[MTRJ75]

Thanks for that. And all the responses here. Seems like the work is never done. I was wondering how all this would work with or without the lawyer. Can't afford to keep paying him every year. 

Also at some point in the next year or two, I'm probably going to accumulate enough work credits for SSDI, if all goes well enough (currently SSI). I was told I was close this time, but nobody will give me a direct answer on how many I need exactly or what happens when that becomes the case. 

Anyway, I hope this helps others going through the process as well. I know I've seen a few threads in the past year. 

[Pistol]

4 hours ago, MTRJ75 said:

 

Also at some point in the next year or two, I'm probably going to accumulate enough work credits for SSDI, if all goes well enough (currently SSI).

@MTRJ75 - I am sorry if I am asking a stupid question but: what are work credits towards SSDI? Isn't the whole point that you CANNOT work?

[MTRJ75]

I don't know that I understand enough to explain it well and I may even getting the two mixed up, but you need a certain amount of work credits over a 10 year period (and there's also some correlation to age) to be eligible for SSDI. If not, you get SSI if you are considered disabled and make less than a certain amount of money. As I said, I was a few credits short. 

I believe SSDI is more money and also SSI doesn't allow you to have more than a certain amount of money or assets to your name or they stop paying you. 

In my case, I can't work nearly as much as I used to. I still try to work as much as I can, but I can't possibly live on what I'm currently able to earn on it's own, due to being disabled. If I am able to make more than a certain amount in a month, I am no longer eligible for SSI payments.

For SSDI, I believe it would be more money and there may not be limits on assets and savings. Under SSI I can't save any money or payments stop I believe. 

Again, I may be wrong about a lot of this, but I'm pretty sure SSDI is better than SSI (or the other way around - whichever one you need the work credits for). 

[Guest KiminOrlando]

I think you have them reversed, but otherwise correct. I am on SSI.

[Pistol]

@MTRJ75 - thanks for explaining it. I am on SSDI - I had worked for all of my life full time when I became ill. My payments were calculated according to my accrued SSI payments off my wages over the years and assets are not an issue. But I am not allowed to earn more than a certain amount a year or loose the benefits ( which I am unable to work at all anyway ). 

I was not aware that you get SSI if you do not qualify for SSDI! 

[MTRJ75]

Now I'm even more confused. Do you have asset limitations on SSI @KiminOrlando?

My work history has been on and off last 15 years. I've had gaps because I probably waited too long to apply. I tried very hard to avoid this. 

[POTSie78]

@MTRJ75 SSI has limited assets.  SSDI requires work credits.  Hope this helps.

[MTRJ75]

Okay, right. That's what I meant initially if I stated it wrongly. The one thing is that a car and house don't count as assets. They're mostly concerned with money in any accounts....which, I don't know how you're supposed to acquire a house or car if you can't save anything. Point being, SSI will help (it's like a blanket to fall on when needed), but I need to get from SSI to SSDI as soon as possible. 

[POTSie78]

2 minutes ago, MTRJ75 said:

Okay, right. That's what I meant initially if I stated it wrongly. The one thing is that a car and house don't count as assets. They're mostly concerned with money in any accounts....which, I don't know how you're supposed to acquire a house or car if you can't save anything. Point being, SSI will help (it's like a blanket to fall on when needed), but I need to get from SSI to SSDI as soon as possible. 

I'm very happy you are able to get some help! 🙂  I was not certain which way it was so I had to look it up trying to prepare myself should that be the road I'm forced to go down as well.  I'm newly diagnosed and at the point where I am on FMLA and applied for short term disability since I have exhausted my paid time off.  I am hoping Mayo can help me before i loose my job.

[Guest KiminOrlando]

Ok, so I have SSDI? I have the one where nobody cares about my assets. I can't earn over a certain dollar amount per year. My attorney warned me not to try to go back to work unless I was certain I could do it because I would have to requalify with credits within a 5 year time frame, I think. She said it is better not to try if you have a chronic illness because you aren't cured and it can flare up or progress at any time without warning. 

[MTRJ75]

Isn’t really ridiculous that you get punished for trying to better yourself and wanting to take less money from them. It’s such a self defeating system in some ways. There’s really no policy in place for chronic illness. That really has to change. I wish some organization were advocating for this. Let us work when we can but realize we may need something to fall back on once it’s recognized we have these illnesses because there are so many ways one can make money now at home if they’re well enough with some creativity.

[Guest KiminOrlando]

@MTRJ75 This is a fact. There should be a way we can work when we can even if it is through a temp agency. You are correct. The system needs to be fixed. Once you have a chronic illness designation you shouldn't have to requalify. 

[Pistol]

@KiminOrlando, @MTRJ75 - the reason we cannot earn money or work while on SSDI is because we ARE unable to. And the reason why we have to requalify every so many years is to determine if we now have improved to the point that we can work again. Many people - with many illnesses - DO get better and can get off SSDI/SSI. 

[Ashc]

Not being able to work because of chronic illnesses adds up to the feeling of frustration and maybe depression. It's kinda isolating really, but it's how things are. This situation isn't on top of the priority at the moment or maybe they're doing their best for us at the moment. Hopefully, things will get better for us soon enough.

[MTRJ75]

22 hours ago, Pistol said:

@KiminOrlando, @MTRJ75 - the reason we cannot earn money or work while on SSDI is because we ARE unable to. And the reason why we have to requalify every so many years is to determine if we now have improved to the point that we can work again. Many people - with many illnesses - DO get better and can get off SSDI/SSI. 

Sure, we certainly can't go to a job and labor every day (or even any days for some of us), but I work from home and can freelance. If I'm feeling well enough, I have the opportunity to take on extra assignments, but now I can't do so in any given month unless I'm sure I can do so permanently. Why would the government want to discourage me from not receiving money from them for a month or two. With many people working from home now and so many different ways to earn money with the internet if you're creative and energetic enough, for people with chronic illness there should be some type of period (say 6 months) of above threshold earning before disability is permanently taken away., 

[MomtoGiuliana]

On 5/2/2021 at 7:44 AM, cmep37 said:

he was 100% certain it wasn't depression or anxiety and he believed it had a physical not a psychological cause.  It was great because after I saw him I could tell any doctor that a specialist in mental health said it wasn't a mental health issue and I do think I was taken more seriously as a result.  

I had a very similar experience.  I think bringing in a psychologist can be helpful.  They are the expert most qualified to come to a conclusion about mental health and it can help a physician consider other explanations.

[E pots]

On 5/13/2021 at 9:40 AM, MomtoGiuliana said:

I had a very similar experience.  I think bringing in a psychologist can be helpful.  They are the expert most qualified to come to a conclusion about mental health and it can help a physician consider other explanations.

Any tips?  I have an evaluation tomorrow.   I'm feeling awful.   In 8 wk flare here.  Scared