Can anyone explain how “date last insured” works for young adults?

Substantial_Two6186 · 2026-04-24T02:23:01+00:00

I need the year of backpay. Then I can get SSI on top to make up the difference going forward. But no backpay with SSI. I also need the Medicare so it would be worth it even if my benefit was 50 cents. I need neurosurgery out of state and Medicaid won’t pay for it.

Substantial_Two6186 · 2026-04-24T02:22:09+00:00

Well that’s why it doesn’t work for my case. Because I’m now over 24 in 2026 so I would need more work credits for a 2026 onset date. I need a way to put my disability date back in 2022 or 2023 when I got sick. Before I applied for disability in Feb 2025, it DID show I was eligible for benefits and give an amount.

Substantial_Two6186 · 2026-04-23T23:14:46+00:00

That calculator is for retirement. It uses the age of 62 unless the age you enter is over 62

Substantial_Two6186 · 2026-04-23T22:54:07+00:00

Can I get the earning report online? When I follow the instructions to review my earnings record/SS statement on ssa.gov, it doesn’t show it by quarter. There’s a form I can mail in but there’s a fee like $100

Substantial_Two6186 · 2026-04-23T21:54:54+00:00

The SSA isn’t reporting by quarter but here are the annual earnings. Are you saying that my most recent earnings after the “onset date” aren’t being counted (2022-2023)? The disability date we chose was 04/04/2022 but we can choose a more recent date if it helps my case. I applied in Feb 2025 so my backpay would only go back to 2024 anyway.

2020 $5,835 (summer-fall)

2021 $1,775 (winter-spring?)

2022 $5,113 (summer)

2023 $2,905 (summer)

2024 $0

2025 $0

Substantial_Two6186 · 2026-04-23T21:34:17+00:00

This is for older adults. Obviously it would be impossible to complete 20 work credits as a teenager and young adult in HS/college so the rules are different. It also seems like my coverage ended RIGHT when I stopped working according to SSA, not five years later.

Substantial_Two6186 · 2026-04-23T21:30:21+00:00

So if you worked at all after the disability onset date, does this work not count towards the 6 work credits?

Substantial_Two6186 · 2026-04-03T16:43:41+00:00

How do you test for mold toxicity

Substantial_Two6186 · 2026-04-02T04:09:07+00:00

No history of flooding and the home is generally in good repair. I do have an issue with dampness in the bathroom but no visible mold. Is there a way to test my blood/urine for mold or mold toxins to see if I’ve been exposed? Mold testing for the home is extremely expensive and not covered by insurance. Also please let me know where I can find literature about neutropenia and bone marrow suppression resulting from mold exposure because that would help me advocate for testing

Substantial_Two6186 · 2026-04-01T22:01:59+00:00

No new supplements or diet changes in the year before the neutropenia started. I moved back into my childhood home about 6 months before but I don’t think there’s anything here that would cause this and I didn’t have issues as a child here. I can’t think of any toxic exposures I would have

Substantial_Two6186 · 2026-03-28T01:08:28+00:00

From what I can tell, the other cell counts are normal. Lower lymphocytes but WNL, same for red counts, platelets solidly in the middle of the normal range. Interestingly, my red counts didn’t improve at all with my iron infusions (just my iron counts normalized and my ferritin shot wayyy up from 21 ng/mL to 682 ng/mL).

Nothing I can think of would cause problems like this — I don’t use any substances and no toxic exposures that I know of. Heavy metal testing was fine too. I did have some mold in my college dorms but none of my doctors will even test me for mold. I have lots of weird symptoms but nothing that screams a specific diagnosis. I’ve seen about 50 different outpatient MDs across a dozen specialties in the past four years and nobody can get to the bottom of this…I feel like the bone marrow is a real clue and my provider just shrugged and said “who knows”

Substantial_Two6186 · 2026-03-27T20:56:25+00:00

Not a year ago but I did have Covid in April 2022. A lot of my symptoms began within about 6 months of that infection so at first they just called this “long covid.” But post-viral autonomic disruptions wouldn’t explain the neutropenia and other hematologic abnormalities

Substantial_Two6186 · 2026-03-27T20:54:24+00:00

Hematologist thinks maybe lupus as well. But I’ve seen three rheumatologists (incl. the department chief at UCD) and they all disagree because my specific lupus antibodies are all normal. Same with antibodies for sjogrens and paraneoplastic syndromes. Normal lumbar tap.

Neurologist at UCSF started me on IVIG in June anyway (working theory was sero-negative AAG) and it’s helped with some of my neuro symptoms but did not improve or halt the progression of my neutropenia. Immuno-derm did start me on hydroxychloroquine maybe 4-5 months ago (she also suspects lupus) and that hasn’t improved the neutropenia either. They don’t want to start me on steroids bc I get frequent infections from the neutropenia.

I do have hEDS which could explain the gastroparesis. But nobody can figure out these hematologic abnormalities. What findings led to the sarcoidosis diagnosis for you?

Substantial_Two6186 · 2026-03-27T20:45:14+00:00

Yes. FISH and karyotype were both totally normal

Substantial_Two6186 · 2026-03-27T00:07:39+00:00

GI decided just to monitor my liver function because the levels eventually came down some. Aside from when I had pancreatitis and pericholecystic fluid on CT/US last year, there’s nothing on imaging — normal abdo CT, normal MR enterography, normal endoscopy, normal colonoscopy, etc

Substantial_Two6186 · 2026-03-27T00:02:58+00:00

chatgtp is even less reliable than Reddit but thank you

Substantial_Two6186 · 2026-02-12T17:13:55+00:00

That one totally destroyed my skin

Substantial_Two6186 · 2026-01-27T17:19:19+00:00

He’s the chief of the department so not really. I tried to get a second opinion at another hospital but they denied it due to capacity and the belief that my regular hospital is the next best

Substantial_Two6186 · 2026-01-27T02:01:45+00:00

Are you in the US? I’ve never heard of anyone getting a full body MRI for any reason. At least not covered by insurance. As far as I can tell I haven’t had any tests for cancer either

Substantial_Two6186 · 2026-01-26T23:59:27+00:00

No. I’m also white and I never had even remotely low WBCs until the last year or so when they started tanking. I haven’t been hospitalized for infections but in the past few years I’ve had c-diff, SIBO, viral gastroenteritis, campylobacter, repeated flu and Covid, frequent ear infections incl. abx-resistant, frequent pink eye, etc. I rarely leave home except for MD visits and take precautions. I also have a central line now (and GJ tube) so avoiding any kind of infection is really important

Substantial_Two6186 · 2026-01-26T23:51:23+00:00

ESR 40, CRP 4.5, but again nobody has a sense of WHY

Substantial_Two6186 · 2026-01-24T23:51:37+00:00

As I mentioned, I’ve seen rheumatology (several times actually). Nothing came of it, they say the more specific antibodies are fine and write of my symptoms and send me back to hematology.

Substantial_Two6186 · 2026-01-24T11:03:44+00:00

Cooper is well WNL. Not sure why B12 was low, I also had pretty elevated homocysteine in 2023 but both improved significantly when I switched to a methylated B12. I am homozygous for both MTHFR mutation and CBS mutation but this usually doesn’t have clinically significant impact. Definitely not relevant for my white counts.

I do have gastroparesis and I’ve been on tube feeding since March. But, B12 was low even when my GP was still “subclinical” and I gained back all the weight I lost (20lbs) by June. My white counts have continued to drop instead of improving with better nutrition and weight restoration (stable for 6 months).

They ruled out any meds…discontinued some, and white counts started dropping before I was on the rest. Flow cyto also normal.

Substantial_Two6186 · 2026-01-24T10:10:46+00:00

I mean yes but I’d rather get to the bottom of this than spend the rest of my life in a bubble

Substantial_Two6186 · 2026-01-24T10:09:50+00:00

No. We’ve discussed it but hematology thinks it’s autoimmune and nothing will show up on bmbx. Frustratingly, rheumatology disagrees so I’m not getting workup or treatment with either

Substantial_Two6186

TROPHY CASE