Posts by Kyle Reed30

Honestly, I'm always skeptical when a team looks this dominant during the summer warm-ups. It’s easy to get carried away with a few early goals, but does anyone else think these early wins are usually just a distraction from the real work ahead?

This isn't some case of organic dementia. I actually reached out to the National Organization for Rare Disorders once, and they were completely in the dark. The issue isn't necessarily how rare the condition is—it’s just how unrecognized it remains. Honestly, it feels like every doctor I see asks me for a definition.
I’d love to dive deeper into the specifics here, but I have to keep things private. I've lived with this since birth, even if it was only just officially diagnosed.

Hey.

My story isn't empty; I just haven't laid all my cards on the table yet, which is why it looks

I'd love to write more, but honestly, I can't due to privacy concerns.

The condition itself isn't that rare.

And this really is a unique case for several reasons, but I'm not going into that here right now.

mellowskipper said:They might call you, or they might not. They didn't call my mom, for instance. And they don't exactly refer people to public doctors.
At the initial review board, whoever happens to be sitting there that day—any specialist, really—is the one who looks over your paperwork. In my mother's case, she's an oncology patient, and her files were reviewed by an epidemiologist. Naturally, the request was denied.

So what am I supposed to do then??

How am I even meant to know if they rejected me without saying anything? And how do you even restart the process if the private providers turn you down?
??????

Brandon Newman95 said:Forget about them accepting stuff from private doctors. It won't get resolved. Everyone on here gave you advice, but you're doing things your own way. Go find other doctors. They aren't going to respect anything coming from a private practice.
Have you even tried talking to a doctor at a public hospital? Who says they won't listen? If they won't, just switch doctors.
People on this forum were trying to help you. Private documentation isn't going to count.
Just call them up and ask. Then you'll hear the answer for yourself.
Good luck with the AMA.
And if this disease is actually rare, but clearly obvious, maybe sharing your experience could actually help someone else out there.

.

Jesus :'(

What do you mean nothing will be resolved? What exactly is the Center for Artificial Intelligence going to do—not call me at all, or just tell me to go see a public doctor? Or are they just going to ignore my files entirely?

Brandon Newman95 said:If it's such a specific illness, then you should actually talk about it. And doctors who haven't heard of it?
Just read the previous posts and look at the context.
The answer is yeah, you can wait a year. First you said she sent you to Mayo Clinic, then you mentioned an evaluation at MIT.
I'm done explaining.
There are heaps of rare neurological issues out there—could be anything from Asperger syndrome (which seems likely here), Huntington's chorea which hits maybe 1 in a million, ADHD, mild cognitive impairment (MID)—like multi-infarct dementia, Fabry disease, and so on. One more thing: I really hope you have medical records from state neurologists. Don't just rely on private doctors.

Look at this part of your post: ''Wait, does my primary care doctor even have to give me a referral?? My doctor just told me, totally uninterested, that she has nothing to do with it and that I should go to Occupational Medicine.''
''Jesus, now I'm actually worried, what if she's intentionally refusing to help me? Or is she legally required to?''

Nicholas Davis4 explained it perfectly to you.

None of those diseases apply here.

I didn't go to the American Medical Association; I went to the American Medical Association, which then forwarded the files to the Center for Artificial Intelligence.

I'm using referrals from private doctors on purpose because waiting for state doctors would take forever. Plus, given how specific this condition is—something I've had since birth that was only just discovered—I wrote an essay detailing my struggles. State doctors wouldn't bother reading it or even discussing it.

Brandon Newman95 said:I know a guy who had heart surgery and he's just stuck waiting for a transplant. He's perfectly capable of working. To people like that, you're just another number on a spreadsheet. There's no money in it, no funding. Honestly, why do you think that doctor sent you over to the Mayo Clinic for an occupational assessment in the first place?

What do you mean by "sent me to occupational medicine"? Are you implying I'm getting nothing?

And she didn't send me to occupational medicine, she sent me to MIT.

Brandon Newman95 said:Sure, you could wait a year—why not. And who says yours is "niche"? They have all the medical records right there, especially since it's most likely just one specific syndrome. Honestly, people with dementia are still capable of working. As for "stricter"—man, money talks. I'm assuming we're talking about Asperger's here.

My condition is highly specific for several reasons. I'm not listing them here; I don't care to overshare my private business. Most doctors haven't even heard of it, and I get asked what it is constantly. And no, it's not Asperger.

Brandon Newman95 said:They didn't actually settle things with him, so you're going to be waiting a long time. Welcome to the real world. You'll be sitting around forever while they just keep "tightening" the rules on small businesses.

So, what’s your take on the timeline? I can't exactly sit around for a full year, can I?

Besides, my condition is highly specific. It's not something they can just breeze through without serious deliberation.

What do you mean by "tightened"? Are you suggesting they need to see more severe symptoms first?

Hey.

It’s been six months since I submitted my application and there hasn't been a single update. Does that mean I was rejected without even being notified?

I tried calling them today but nobody picked up. I'll try again tomorrow morning.

How many months did it take for your evaluations at MIT to actually wrap up??
Thanks.

mellowskipper said:Occupational Medicine basically refers to medical evaluations tied to specific categories—think things like driver's license exams, permits for carrying a weapon, or even enrollment requirements for certain vocational schools... They also perform routine physicals for employees based on specific job requirements and can recommend changes to a person's work duties or placement.
Given that you're only 20 and barely have any work history, I'm not entirely sure what kind of outcome you'd get from an assessment of your capacity to work.
If your condition isn't progressive, maybe try to train yourself for some kind of manageable role—you should probably file an application for disability benefits with Child Protective Services.
If you truly find yourself unable to work now or in the future, it might be better to just wait it out for family benefits, assuming your parents are still working.

Sent from my Boeing 747 using Reddit

I'll shoot you a DM so we can talk more easily.

mellowskipper said:So, what exactly is it you’re looking for here? I mean—are you currently employed and just finding yourself unable to perform your duties, or do you have a certain amount of seniority? Is your employer actually referring you for a job reassessment?
If you're based in Washington, D.C., the MIT facility is located over at the Medicare office on 5th Avenue, and usually, it's your primary care physician who sends you there for any kind of evaluation.
Occupational medicine is a completely different matter entirely, so you really need to figure out what your actual goal is first.

Sent from my Boeing 747 using Reddit

I'm in my early 20s. I'm not working right now. When I had jobs, I kept getting fired because I couldn't handle even the simplest tasks. My total work history is just a few months since I tend to last about two weeks at any given place. My employer isn't sending me anywhere. Basically, I've had a condition since birth, but it was just recently diagnosed, and it makes everything complicated.

So, what is Occupational Medicine? And what actually happens during those appointments?

Laura Cox5 said:So, there’s this specific agency you need to look into:The Bureau of Vocational Rehabilitation and Disability Employment Services Basically, they handle all the disability assessments, but you can't just show up out of nowhere—you need an official referral from your doctor, along with every single one of those medical reports in their original form. If you're looking for them, their New York Address is 5 Corporate Street on the ground floor.

Does a GP actually have to provide that referral? My doctor just gave me this blank stare and told me she had nothing to do with it and that I should go to the Mayo Clinic instead.
Jesus, now I’m actually worried. What if she’s intentionally withholding it?🙂 Is she legally required to?

Laura Cox5 said:So, there’s this specific agency you need to look into:The Bureau of Vocational Rehabilitation and Disability Employment Services Basically, they handle all the disability assessments, but you can't just show up out of nowhere—you need an official referral from your doctor, along with every single one of those medical reports in their original form. If you're looking for them, their New York Address is 5 Corporate Street on the ground floor.

I get what you're saying, but are we talking about Medicine Work here, or is this something else entirely?

Thanks!

I’m looking for some insight from someone who actually knows their stuff.

😛😛

mellowskipper said:I don't really see any reason why anyone would visit Medicine Work before the actual work capacity evaluation is finished. That specific assessment is handled through Medicare—it doesn't really have anything to do with Medicine Work.

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But that’s exactly what my doctor told me. Now you've got me confused. Can someone please explain the next steps? What am I supposed to do with all these medical records? Where do they go? Do I need to fill out paperwork with my primary care physician, or is there something specific I need to do there? My doctor insisted she isn't involved in this at all and that I just need to head straight to Medicine Work.
Please, I need a clear explanation. I'm navigating this entirely on my own, and honestly, it's hard to process all this information because of how sick I am.

Thanks!

Hey there.

I just saw my GP, and she told me to take all my test results over to the Mayo Clinic. I still have one more exam to wrap up, then I'll drop off the full file. Can someone tell me what actually happens once you show up at the Mayo Clinic and how you find out if they’ve approved your disability claim??

Is it legally possible to switch my primary care physician if they're currently in the middle of an evaluation for disability benefits?

Just looking for verified info here.

mistybear56

The condition is listed in the ICD, but I’m skeptical about this other thing you mentioned. I remember seeing an article once claiming it was only recognized as a disability in modern, developed nations.
I can't discuss this with my private neurologist right now, but I'll bring it up with my GP.
They won't know anyone with that specific condition. I realize this might sound strange—since I come across as perfectly sane and articulate here on the forum—but I wouldn't be able to handle a role like that as a standard employee. I've struggled with much simpler tasks. However, if it were treated as a disability with the necessary accommodations and clear instructions, I might actually be able to manage.

placidrider48
Yeah, it's a recognized diagnosis here in the US.
Could you send me a DM with the specific diagnosis you're implying? When you say you think you know what we're talking about, I have a feeling you aren't thinking anything good.

placidrider48

All right, great. I can get started now.
I have to hide my condition. My whole life is too complicated to explain in one go. Right now, I’m forced to stay quiet because my diagnosis isn't even officially in the system at my doctor's office yet. As far as the medical records show, I'm perfectly healthy. It isn't until I finish my remaining tests, get everything logged into the system, and complete a formal disability assessment that I can actually tell an employer what's going on. If I disclose a chronic illness to a hiring manager right now, they won't hire me. Besides, since there's no official paperwork yet, I'd just look like I was making excuses. My strategy is to apply as a healthy person. Sure, it's a losing game—I often end up getting let go after a few weeks once they realize I can't meet their standards—but it beats having zero income. I have to play it this way. First, I get the paperwork in order so the diagnosis is real, then I can deal with the employers.

What happens if someone gets fired from one of those specialized roles meant for people with disabilities, but they don't actually have a documented disability themselves and are left with zero income? How does anyone even begin to help someone in that position?

This is going to be a complicated question. Apologies if this falls outside the realm of legal expertise:

I’ve lived with this disability for as long as I can remember—over twenty years now. It wasn't until this year that I finally received an official diagnosis. Even now, I'm still stuck in the bureaucratic loop, waiting on five different specialists to review my case and sign off on the ICD classification. Does this actually change anything? My specialist told me it’s a massive issue because, on paper—in my medical records—it looks like I’ve been perfectly healthy since birth. But that’s a lie; nothing is actually fine. Could this become a major roadblock when it comes to getting an expert assessment?
The disease is highly specific. Here in the States, we lack the specialized expertise needed to handle it properly. It’s largely misunderstood. For a long time, it wasn't even included in the ICD, and even now, the terminology keeps shifting. The diagnostic tests are just as unstable; they change constantly because they aren't precise enough yet. In most developed nations, this is officially recognized as a legitimate disability.