Posts by Brandon Newman95

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feralridge3 said:I went scrolling back through seven pages of this thread, but I couldn't find any discussion regarding the Social Security disability board.
Quick question—does anyone know how long it typically takes to get a decision from the disability commission? I submitted all my medical documentation on January 6th, and I haven't heard a single thing yet. 🙂

It’ll take forever, and they'll probably just end up labeling you "fit for duty" anyway. Honestly, if you think you're getting a straight answer on the pension subforum, good luck with that. You'll be waiting until the next century before anyone gets back to you. It's a joke. They’re literally letting people crawl back into their jobs right after fighting cancer, and don't even get me started on the other total lunatics they let through the door. I won't even go there.

Kyle Reed30 said: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.

Oh, sure, because apparently *no* doctor is capable of spotting a rare disease, and the Mayo Clinic doesn't exist for cases like this. I'm honestly shocked your private neurologist didn't refer you there. Just once. It's called a referral. Honestly, it's a shame, but your story sounds pretty hollow to me.

Kyle Reed30 said: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.

If I had to guess, we're talking about organic dementia.

Nicholas Davis4 said:No private provider is going to take on a complex illness if there isn't a clear profit margin in it; frankly, they don't have much skin in that game.
I'll be honest, I've completely lost the thread of your argument.
If a case were truly complicated and serious, that’s exactly when you’d see a private clinic jump in. There's no way they can match the sheer scope of public healthcare; they simply aren't built to deal with high-risk patients who require exhaustive testing and long-term management.

Since you seem to be such a unique case, why not start a new thread about your condition? I'm sure someone out there will relate.

I am genuinely curious... not because I'm interested in people—honestly, I have plenty of social connections already—but because I want to understand how a private specialist could run so many tests and reach a diagnosis that the entire public health system missed during all your previous screenings.
In my experience, that sounds like science fiction.
But hey, there's always an outlier.

Besides, if it's really that rare, there should be an American association for rare diseases. Otherwise, you'd actually put in the effort to dig and dig for answers.

mellowskipper said:I've come to the conclusion that it's essentially some kind of ultra-rare condition—like, the only one of its kind in the entire US—so I suppose that’s why they won't do it; they just don't want anyone to actually identify it.

I know of some specific conditions: ADHD, Asperger's, McFabry, Huntington's chorea.
First she claims it's a rare disease, and now suddenly it's not that rare here in the States.
The whole thing just screams neurological or psychiatric diagnosis to me... I mean, maybe I'm off base, but that's my guess.
When private doctors don't know what's going on, they just point you toward the public hospital system. Instead of actually helping people, they just keep things quiet.
Honestly, it's no wonder this country has gone completely to hell.

Kyle Reed30 said: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.

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.

Kyle Reed30 said: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.

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.

Kyle Reed30 said: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?

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?

Kyle Reed30 said: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?

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.

Kyle Reed30 said: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.

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.

Jose Miller3 said:I’m honestly dying to know—what kind of actual rights are tied to which neighborhood here in the States? Like, is there some specific law that says you lose certain rights just based on which district you happen to live in?

People were talking about this ages ago, but everyone just gave up on the idea.

loneheron93 said:I remember reading somewhere about what "rights" I’d be giving up if I switched to a doctor outside my neighborhood, but I can't track down the page now.

Basically, nobody in my area is taking new patients—I've checked every single local clinic possible, and they all say the same thing—even though they aren't even hitting their quotas... I actually reached out to Medicare and the director, who basically wanted me to hand over specific names of doctors so they could go "handle it" (as if?), but I really don't want to cause drama for myself or them..

But honestly, staying with my current doctor isn't an option either. There’s zero rapport there—no connection at all—and I actually feel embarrassed just asking for help.

I'm honestly stuck..

We talked about this before, but you don't lose anything by switching to someone else within your district. And regarding this whole mess—I disagree with you, you really should give them the names. Yeah, let them handle it. I need to dig up where I read that if doctors have fewer patients than the limit, they're required to take you on. I'll let you know for sure if it'll be an issue. If you're cool with it, shoot me a DM (PM) letting me know which neighborhood we're talking about.

Karen Wells17 said:I caught Corona after getting vaccinated, but since I had similar—though way milder—symptoms right after the shots (not after catching actual Corona!), I'm starting to wonder if it was the vaccine... Look, I'm in the veterinary field, so I'm usually pretty pro-vax, but honestly? It feels like a disastrous cocktail of the vaccine, Corona, and maybe being exposed to chickenpox acting as a trigger... I guess I'll never know for sure...
And they did my lumbar puncture in the ER; I got the results back within a few hours. That ruled out meningitis, and because my protein levels were up, they concluded it was Guillain-Barré...
So, yeah, now I'm still stumbling around trying to deal with my kids (two little terrorists, ages 4 and 6, who are fighting every five seconds—you really have to watch your step!🤣)
Anyway, I managed to walk up the stairs at the local mall today without any issues, so I'm telling myself things are looking up... Plus, I can already carry my youngest, who's 43 lbs, from my bed to his without trouble... so at least muscle atrophy isn't my main worry...
My hands are still kind of wooden, though. My feet are almost back to normal...🙏 And the ataxia trips me up whenever I get distracted and look up too fast while walking. I don't fall flat on my face, but I definitely wobble...🤦
In any case, this illness is just exhausting...

I don't know, I'm leaning towards it being chickenpox, or maybe both of those. All three together, plus the aftermath of Corona and the shots. But who knows. I didn't realize they'd even run a spinal tap in the ER—but I guess that's just what happens in neurology. I'll dig through all those test results I've done, but the specialists in neurology usually do a good job. Because in the world of neurology, I've been a patient since 2009 and I'm still full of doubts. My neurologist actually recommended something once, I think it was CoQ10 or some kind of coenzyme.

Karen Wells17 said:Hey everyone, just wanted to bring this topic back up for a second.
So, I’m finally back home, about a month after being hospitalized and getting Intravenous immunoglobulin treatment at the neurology ward at Mayo Clinic for, of course, Guillain-Barré syndrome.
Even though I'm typing this with fingers that still feel totally numb—I'm hitting near-normal speeds, mind you—I can walk about a mile or two on my own every day now.
But how did this whole mess start?
I honestly don't know if the trigger was Pfizer (because I had a similar, though way milder, sensation of tingling and weakness in my limbs right after that), the actual COVID virus itself (which I also caught), or even chickenpox that my kids brought home from daycare, which basically held our house hostage for over a month (since I've got two little boys).
Anyway, it started with this symmetrical tingling in my arms and legs that just kept getting worse over about two weeks until I could barely walk, let alone wipe myself after using the bathroom... I started tripping over everything and practically bolted—well, figuratively, since I couldn't run anywhere—straight to the ER.
After a lumbar puncture and some neuro tests, they diagnosed me with GBS, so I ended up stuck in the hospital hooked up to an IV drip.
Now, here's the thing... I'm a smoker. Which means I was basically half-dead, crawling around outside with a walker just to grab a coffee and have a smoke. I don't know if that actually saved me or anything, but I was the only one in the room who managed to stay mobile (even if I nearly poked my own eye out every time I tried to brush my teeth...🤦).
Since I'm always out and about (I work professionally with dogs and even wild animals), I was exercising like a maniac even while I was in the hospital.
They let me go after ten days, even though the doctor wasn't exactly thrilled about it—probably because I was driving them crazy constantly pacing the halls (even if I was doing it on all fours like a total nutcase)...

What did you deal with first—the vaccine or the actual virus? Because if you already had COVID, you really should've checked your antibody levels to see when you even needed the shot. Your family doctor can tell you that stuff. Maybe the chickenpox was just the "final straw," which can definitely leave lasting effects, especially as you get older. It's a tough question figuring out what the trigger was. I wonder if they checked your homocysteine levels; it's expensive, but you can see it in the spinal fluid and through a lumbar puncture. If you don't mind me asking, how long did you have to wait for those spinal fluid results?
In a weird way, smoking probably helped save you in part...
And as for your ex—most guys these days are just "fair-weather" types. As soon as things get messy, they vanish without a trace.

silvernomad3 said:Hey there,

I've got doctor's orders for all these tests:

SE, KKS, elf, immunofixation, immunoglobulins, beta-2 microglobulin, anti-leukocyte antibodies, hepatitis B and C markers, CMV, EBV, Vit B12, Vit D, folic acid, ferritin.

Can anyone suggest where in Washington, D.C. I can get this all done at one single location? Also, do I need to make appointments for any of these? I'm guessing my local clinic won't be able to handle this much stuff, right?

Thanks! 🙂

Rib or Beverly Hills?

Brenda Alvarez24 said:Look, CNN is absolute garbage, but I was searching for something about the Holy Spirit and this popped up—some nonsense about them starting a petition 🤣
I’m not even talking about whether we need a new system or whatever.
It's more about the fact that they don't even use the tools they already have.
They had me wandering aimlessly around the hospital for an hour and forty-five minutes, claiming the department I was sent to doesn't exist, then saying it isn't there, then it's not where the sign says it is... just a total nightmare.
And then, a week ago, when I called to check on my results, they told me I wasn't even registered in the lab system. Like, wtf holy spirit, how are you running tests on me if I'm not even in the books??!
Ed Koch probably had them all in his pocket; is this crap his legacy?

Hit me up in PMs.

Brenda Alvarez24 said:Look, CNN is total garbage, but I was searching for something about the Holy Spirit and this popped up—like they're starting some petition 🤣
I'm not even talking about whether we need a new system or whatever.
It's more about how they don't even use what they already have.
They had me walking in circles for an hour and 45 minutes inside the hospital, claiming the department I was sent to doesn't exist, then saying it's not there, then it's not where the sign says it is... just absolute chaos.
Then, a week ago, when I called to check on my results, they told me I wasn't even registered at the lab. Like, wtf holy spirit, how can you be running tests on me if I'm not even in the system??!
Ed Koch probably had them all in his pocket; is this mess his freaking legacy?

For that last part, you'll have to ask him if he ever comes back from the dead. That’s why I’m telling you, the director needs to be an actual manager, not someone acting like this. You submit huge requests and they still aren't even logged in. A little bit of "hey, we see you" goes a long way—they actually have to have you on the books.

Brenda Alvarez24 said:😂 😂
Look, CNN might be trash, but I’m pretty sure this whole thing is just a massive joke given how much they've screwed me over.
Their system is just soooooo perfect... so go ahead, just use it!
You don't need to be 3-10 times faster. You just need to—actually use it!

They're comparing Chase Bank against the BIS while using every other hospital out there.

Brenda Alvarez24 said:I have no clue, this whole thing is just a disaster to me. I spent 25 years living in the Suburbs, and the organization in both the wards and the clinics there was absolutely spot on.

And when it comes to their IT situation, they’re all whining about some new system, claiming someone is rigging it for certain people, while acting like the current one is perfect... Maybe the tech works fine, but honestly, some of these people just need a kick in the pants.

Plus, they won't even send my results to my primary doctor. I want them sent to me, just like every other clinic or hospital I've ever been to.

I don't know what kind of GDPR nonsense they're hiding behind when I'm just asking them to upload my results to WebMD.

It’s nothing but pure laziness and negligence. No excuses.

Yeah, let me tell you about one summer when we had coverage—they actually sent the records over to the primary doctor as an official report. Don't even get me started. It's always "we don't feel like it"—I am constantly arguing with them. Everyone else sends stuff without a hitch, but then you have these stubborn ones. I happen to know they all use the exact same system, and they could easily pull data from other hospitals if they wanted to, long before any of those GDPR laws were even a thing.

Brenda Alvarez24 said:I honestly have no idea who’s playing games here. Are nurses actually selling patient data to scammers?
I asked them to just put everything on WebMD if email is such a mess.
What’s the big deal with that?
Is it some Russian hacking thing?
🤔

P.S. I got it sorted, but I can move this to DMs. It wasn't through the usual channels, but I don't want to get too deep into the weeds here.
Seriously though, they're sending stuff via snail mail. I don't get why they won't just use the FDA.

Hit my DMs. I gotta know—is it all just Russians hacking everything?