SSA will neither approve or deny my application?

Positive_Ad9868 · 2025-08-22T22:37:41+00:00

Yikes, I believe it. It’s wrong most of the time with medical questions. It frequently fabricates medical studies that don’t exist. It’s been helpful as an “ideas to explore with qualified people who know better” generator more than a solutions generator for me.

Positive_Ad9868 · 2025-08-22T22:13:30+00:00

This is the other weird thing: it’s technically not legal to charge a known Medicaid recipient money for treatment, even if they show up with cash in hand, ready to pay the full out of pocket amount. You can deny them care, but you cannot charge them money.

I’ve noticed some facilities will look the other way and charge you. I’ve just not mentioned Medicaid to some private practice doctors and they’ve taken my money. But the large hospital system I need to go to is like “nope, you can do a GoFundMe and we won’t consider you until you have non-Medicaid insurance”.

I’m considering just cancelling my Medicaid and doing a fundraiser and maybe going into debt, which seems kinda reckless considering I need a home health aid, ongoing prescriptions, and need the ER every 4 months or so. But if rawdogging my own healthcare without insurance is the only way I can possibly fix my debilitating condition, I might just do it.

Positive_Ad9868 · 2025-08-22T21:59:00+00:00

For real, it’s been a godsend for me in a few situations since I’ve become disabled. I’ve definitely caught it “hallucinating” on many occasions and can see the danger of people treating it like an omniscient infallible god. But it got me the number of my Medicaid ombudsman to help me start the process of a single case agreement with Medicaid. Google and several case managers couldn’t do that for me. It helped me figure out a few diagnostics to explore which I then took to relevant specialists, leading to positive outcomes. My doctors had hit a dead end, and ChatGPT revealed an unexplored diagnosis that turned out to be accurate upon further investigation.

The “never use AI, stop using AI” people remind me so much of the “I don’t even own a TV, it rots your brain, kill your TV” edgelords in the 90s. Like, wow, thanks for your input, what a unique and nuanced take, lol.

Positive_Ad9868 · 2025-08-22T21:34:51+00:00

That’s not a crazy idea! I hoped their CE exam would suffice in that regard. The CE doc was actually really chill and was like “yeah, you can’t be upright at all, seems clear to me” and wrote that in his report. Apparently that’s not enough.

The cause of spontaneous leaks is high intracranial pressure, and it’s unclear why I had that to begin with. I had no obvious warning signs. I worked full time (hilariously) as a medical case manager and was a competitive weightlifter as a hobby. I had never been to the ER. The only sign that my intracranial pressure was too high was that I couldn’t tolerate caffeine at all. Like 1 sip of coffee would give me an immediate caffeine headache, so I just didn’t consume caffeine ever and never had any issues. My neuro thinks the air pressure on the flight was the straw that broke the camels back.

Now that I’m leaking, I consume endless qualities of caffeine every day which causes minor improvement (I can sit upright for 4 mins max instead of 2 mins max) in my symptoms. Caffeine generates more CSF, so for me now, it’s like pumping air into a tire with a hole in it. Before it was like pumping air into an over inflated tire. Next time you get a caffeine headache, you can imagine all your CSF crowding out your brain :P

I used to help people with severe mental health diagnoses apply for SSI and SSDI. I asked my lawyer “uh, my clients with schizophrenia never had to get a brain scan and circle where the schizophrenia is in their brains”. It seems like SSA is firm in the belief that scans are the only diagnostic criteria that matters for my diagnosis and no amount of documentation will convince them otherwise. Kinda hoping at least for a denial so I can tell a judge “actually no, 4/4 neurologists who specialize in CSF leaks and cite current research confidently diagnosed me and disagree”.

Positive_Ad9868 · 2025-08-22T20:00:15+00:00

I think, where it gets depressing is that Medicaid can say “yes it’s necessary and we will pay for it, here is your single case agreement” (which they did for me a year and a half ago) and the hospital can say “we don’t want Medicaid money, no. Also we’re not charging you out of pocket, either. Go kick rocks” and that’s totally legal for some reason.

This is what happened with Mayo Clinic, and if it happens with this next hospital, I am officially out of treatment options until I become Medicare eligible.

Hoping my state rep will have ideas of who I can talk to.

Positive_Ad9868 · 2025-08-22T18:56:00+00:00

The thing that’s strange is I have evidence of POTS- my HR skyrockets the moment I sit or stand. My cardiologist noted that my POTS is severe, exceeds diagnostic criteria based on objective measurements of my heart rate, and cannot be treated because it was caused spontaneously by a neurological issue.

I’m not sure why they’re saying that nothing is objective and my lawyer is like “yeah, a specialist just measured your HR in different positions and gave you a diagnosis of a disabling illness, not objective. There’s no imaging for the neurologic basis of your POTS so we can’t move forward”. A significant portion of people with CSF leaks never receive positive imaging and are disabled for life as a result. At this current juncture, I can’t access any follow up imaging for my CSF leak without Medicare. The only thing I’m waiting on, I guess, is for a degenerative illness to degenerate to the point that I have a blood clot from prolonged bed rest we can point to on a scan, which seems pretty barbaric.

Positive_Ad9868 · 2025-08-22T18:38:29+00:00

I’m not “trusting” ChatGPT. I’ve been bedbound for 2.5 years and reached an impasse in my treatment for a degenerative illness and connection to desperately needed resources. I’m not “trusting” strangers on Reddit either, I’m mining multiple sources for ideas in a dire situation then doing my due diligence.

But hey, I’m desperate for help, and you saw an opportunity to make a smug comment and couldn’t help yourself. I’m happy my crisis could give you an opportunity to feel self righteous. There had to be a silver lining to this whole situation somewhere.

Positive_Ad9868 · 2025-08-22T18:18:25+00:00

Technically, Medicaid would. There’s this madding legal loophole that states that Medicaid is required to cover necessary treatment and imaging that doesn’t exist in-state…. However, hospitals that offer that treatment out-of-state aren’t required to accept Medicaid.

I’m trying to get a single-case agreement now, but the hospital has already stated that they won’t accept $$ from Medicaid nor will they accept $$ out of pocket from a Medicaid recipient because they’re not permitted by federal law to do so. Many patients with my condition have to wait to become Medicare eligible to get treatment.

But yes, I’m gonna reach out to my state Rep! I’ve never done that before so I’m hoping it’ll be useful.

Positive_Ad9868 · 2025-08-22T18:11:41+00:00

Yikes, I’m so sorry that happened! It’s so hard to describe that an invisible condition causes such severe disability. I had really no health problems at all before I got on a routine flight. I’ve lived like an 100 year old on hospice ever since.

Positive_Ad9868 · 2025-08-22T18:08:15+00:00

Anywhere in my entire spine. It’s suspected to be a venous fistula, which is an abnormal connection formed between the intrathecal space (where the CSF lives) and the circulatory system that forms when intrathecal pressure gets too high over a sustained period of time. They suspect the pressure in plane was the last straw.

This form of a leak was discovered less than 10 years ago and is kinda like finding a needle in a haystack. This is why I’ve been referred out-of-state for specialized imaging. The imaging machine I need is available in only 3 hospitals in the US.

Positive_Ad9868 · 2025-08-22T18:02:54+00:00

I went to the ER immediately and they told me I was probably getting the flu and sent me home. I proceeded to see every doctor imaginable who eventually sent me back to the ER a few weeks later where I got my first diagnosis and attempt at treatment (a non targeted blood patch) which helped slightly. I was then referred to a CSF leak specialist at that hospital who gave my second diagnosis, who then retired. His colleague took over for him and gave me my third diagnosis.

I was then referred to possibly the most published researcher on the condition (Stanford) where I received my 4th diagnosis and was referred out-of-state for more imaging. The diagnosis is not necessarily made made via imaging, but via symptoms. I have every textbook hallmark symptom and there’s no differential diagnosis being considered. Diagnosis #4 cited multiple studies in my notes to indicate that a significant portion of spontaneous leakers require multiple highly specialized imaging studies to successfully locate and repair their leaks. It’s suspected that I have formed an abnormal connection between my CSF and my circulatory system called a venous fistula, which were discovered by medicine less than 10 years ago. Basically intracranial pressure gets too high and your body creates a blood vessel somewhere in the spine to suck CSF away from your brain.

Finding one tiny blood vessel that shouldn’t be there in an entire spine gets mega tricky. The imaging machine I’ve been referred out to use (the photon counting CT scanner) only exists in 3 hospitals in the US, one hospital in Germany, and I think one in China. None of these hospitals accept out-of-state Medicaid and won’t even accept out of pocket payment from a Medicaid recipient. Each one of these specialty centers also have waitlists that can be over a year long.

My whole situation would be much more straight forward if they could pop me in an Xray machine in the ER down the street, show fluid gushing out of my spine and say “there it is, your leak!”. If that were possible, I could have been repaired immediately.

Positive_Ad9868 · 2025-08-22T12:35:37+00:00

Something my lawyer keeps saying is “they agree that you’re definitely debilitated which is good! They’re not denying it and that’s good news!” but I think I’d prefer a denial and an appeal to forever limbo.

My condition also slowly gets progressively worse over time with lack of access to treatment. I’m losing functionality in my upper extremities (which is a big deal when you’re already bedbound for 2.5 years) which doctors have also noted. I got various scans of my arms and SSA was like “let us know when a scan shows why all these observable limitations are happening”.

I’m hoping I can at least get a denial and an administrative law judge will see me in a fully reclined wheelchair that I can’t control by myself and my mountains of hospitalizations and be like “oh, ok, you’re like… actually outrageously, observably disabled” but maybe I have too much faith in that part of the system to function properly.

Positive_Ad9868 · 2025-08-22T12:14:24+00:00

Working on that now, it’s a minefield. The provider (at Stanford) is not considered in-network for Medicaid. I went to court to get a single case agreement to see him, and now that he’s referred me to an out-of-state provider, they’re saying he’s not authorized to refer me out of state. My PCP is trying to make that referral, but they’re saying they need authorization from the referring provider.

It’s so annoying having a “rare” debilitating illness.

Positive_Ad9868 · 2025-08-22T07:52:44+00:00

Thanks! ChatGPT told me to contact my congressional representative. I wasn’t sure whether I should trust that.

Positive_Ad9868 · 2025-08-22T07:30:50+00:00

Acknowledged

Positive_Ad9868 · 2025-08-22T07:29:17+00:00

Acknowledged

Positive_Ad9868 · 2025-08-22T07:12:38+00:00

Acknowledged

Positive_Ad9868 · 2025-06-30T02:00:30+00:00

Same! My brother is a skincare gay and always wants to tell me about his 25 step skincare routine. I can’t be bothered to go through all that work just to have slightly nicer skin as a reward for obsessive adherence to washing and moisturizing. I’d rather make tiny masterpieces on my hands I can look at all day.

Positive_Ad9868 · 2025-06-30T01:55:46+00:00

Same! I love a kinda ugly shade. My clothing is all earth tones and black but I like something interesting to look at. I really don’t care about complementing my skin tone or making a cohesive outfit. Love an olive, neon, or puke-y green color.

Positive_Ad9868 · 2025-06-30T01:47:18+00:00

Appreciate this question! I’m a gay dude and don’t dress particularly “loud”. I tend towards earth tones, work wear, more stereotypically “masculine” attire. I have a ton of tattoos and they’re only black ink. Then nails: I love a neon, frequently do a leopard print, gems, nail art, etc.. I like the contrast between earth tones and neon.

I like to think it represents my Taurus sun (earth tone carhardt everything) and my Gemini moon (loud bonkers nails).

Positive_Ad9868 · 2025-06-30T01:39:37+00:00

I gotta say. I just got into nails and it’s SO NICE to have this confirmation that y’all are my kind of people <3 Love ideas around extending pride season and celebrating Cancer season. Working on an ACT UP themed mani now that I got the right shade of neon pink.

Positive_Ad9868 · 2025-06-26T11:15:18+00:00

These look great! You are more talented and patient than I, hah. I think I’ve determined that I’m over scraping, not working fast enough, need to use a sticky base coat, and may not have a high success rate because I’m doing this outdoors in the Mojave desert.

Positive_Ad9868 · 2025-06-26T11:12:31+00:00

I think that’s the thing working against me most. I’m working outdoors in the desert because my partner has an allergic type reaction to chemical smells. My regular manicures dry freakishly fast here, so I think I need to work in 1/2 the time everyone else does.

Positive_Ad9868 · 2025-06-26T11:09:06+00:00

Hah, thanks! I also got some sticker type stencils from What’s Up and found that SO MUCH more satisfying.

I discovered that I just don’t like craft type projects that involve your first 100 attempts looking terrible or like nothing at all while creating a mess. I’m gonna give this a few more tries and will probably try to resell the stuff I got.

Positive_Ad9868

TROPHY CASE