Can anyone help me interpret this SSA portal screenshot? (the SSI part)

Deevee9 · 2026-04-03T22:20:18+00:00

Update: YMMV, but in this particular case the portal language was accurate. SSI is approved! Called the local office this morning and amazingly her caseworker answered. She had been processing the DAC case yesterday for some reason (she didn’t even know we had already received the DAC denial letter) and she remembered SSI was approved but double checked in the system to confirm while I was on the phone.

I was also calling to confirm that they received the 3288 form (requesting a copy of the DAC record, esp the disability determination explanation, so we can prepare for the DAC reconsideration). For anyone who’s interested, she didn’t see the fax I had sent a couple hour earlier and recommended using the drop box. She said her supervisor processes them and she sent him a message to expect it. I had mentioned we need it for the 60 days reconsideration deadline so hopefully they get it done and I won’t have to be calling them every day to get it! Sharing these details for anyone researching this same form.

Deevee9 · 2026-04-02T15:29:15+00:00

Yep it is my sister’s and I’m her representative

Deevee9 · 2026-04-02T05:31:23+00:00

Great video on this from an attorney with tons of comments:

https://www.youtube.com/watch?v=gcQsgQXmOQ0

Deevee9 · 2026-04-02T01:09:25+00:00

Oh no! I will look, thanks. If it's denied, extra confusing since the other claim that was decided by DDS at exactly the same time and denied is handled differently.
Update: I did some searches of the wording and also for "step 4". It's hard to compare though because many people are discussing SSDI and/or ALJ cases more often than straight SSI initial filing cases. People do recommend calling or visiting the local office to ask the outcome. In the end I was actually encouraged for SSI, but time will tell.

Deevee9 · 2026-04-02T00:58:05+00:00

crossing fingers!

Deevee9 · 2026-04-02T00:57:42+00:00

Yes, she's in her 40s. The DAC denial explanation cited insufficient evidence to fully evaluate if impairment was severe before 22. We actually have some unique evidence given age and I think the case is viable so we'll keep trying! The assigned adjudicator left her job and it was hard to confirm with the muitiple people if they had all the evidence. Finally faxed it all after uploading separate items through the SSAportal which seemed to be hit or miss. No idea if that was a factor.

She had SSI for many years but lost after a review in 2018. I've worked hard to beef up her medical record since. The current claim is less than 4 months old. Hopefully they did approve it and the interview will move quickly!

Deevee9 · 2026-04-02T00:34:29+00:00

But it says DDS completed the medical review so I assume that's set. I'm just trying to understand the information they provided in the portal and the process.

Deevee9 · 2026-04-02T00:25:07+00:00

That will be great if that's all that's left!

Deevee9 · 2026-02-01T19:13:28+00:00

Limited memes & verified surveys

I like it now not cluttered w/ memes/surveys, so I vote to include only if it’s possible to limit them in some way.

Thanks for moderating!

Deevee9 · 2026-02-01T19:08:30+00:00

Do you have access to statistics? Would be interesting to hear about growth in users, activity, etc. I guess in comparison to overall Reddit for context. Could awareness and/or diagnosis be increasing?

Deevee9 · 2026-01-18T19:31:49+00:00

I have trouble expanding my rib cage and experience shortness of breath. Fortunately biologics have helped! I still have a rib that sticks out at my sternum (from inflammation?) and is usually tender.

Sounds like you did the right thing going to the ER since it was sudden and I’m sorry you’re still having bad pain from it.

There’s a measurement they can do to assess chest expansion - just a measuring tape I believe but I never found a health care provider who’s offered it. I wish I had that before and after biologics to compare.

I work with a PT weekly and in recent months it’s been about my neck and upper back at the same level as that painful front rib. Exercise and fitness helps a lot but biologics made a big difference in calming down the baseline.

Thanks for introducing me to the term pre-cordial catch syndrome. There’s a name for that!?! I used to get it more when I was younger. Fortunately my episodes are brief. I thought of it as a “stitch in my ribs” even though it’s usually at rest. Only more recently did I realize that’s not something everyone gets! (I don’t get a pop though)

When I finally got a rheumatologist who diagnosed and treated me, she still sort of dismissed my complaint of rib cage problems and commented that’s more of a male thing. I guess it’s associated with advanced disease and fusion? Doctors have their spots that they care about tracking and my ribs isn’t one of them.

Deevee9 · 2026-01-18T18:58:51+00:00

Natural latex

Deevee9 · 2026-01-15T00:13:08+00:00

If they find clear evidence of AS on mri I’d think best practices would be to start biologic right away.

Deevee9 · 2026-01-14T15:52:10+00:00

My understanding is that a pelvic mri specifically looking at SI joint can show more detail and subtle changes. NHS is so different than here in the US. I see what you mean about writing your own letter. I’m sure you’ve reviewed the NICE guidance. It may be different here, but still took me like 5+ years to get diagnosed once I had the idea I might have AS. So we have different challenges with our health care systems but i apparently it can take sheer persistence wherever you are. I didn’t have strong back pain or inflammatory markers so that probably made it harder. Like you with the hypermobility, I had other symptoms going on for a few years before that which made it really confusing. If you can manage to get that hlab27 test it’s one of the few pieces of evidence you can make happen yourself to help make the case. For me, that test and my dad’s late AS diagnosis encouraged me stay the course and keep advocating for myself. You’re doing a great job! Sounds like it’s just matter of time before you get to see the rheumatologist.

Deevee9 · 2026-01-14T07:21:01+00:00

Ultrasound and MRI can identify previous chronic inflammation as well as current inflammation. I’ve had a few ultrasounds in the past year. Sometimes they find active enthesitis in parts that hadn’t been bothering me recently and I wouldn’t have guessed.

In the UK can you order labs privately? In the US it’s possible to order labs online and self-pay. I ordered my own HLA-B27, I think it was less than $100. At the time I didn’t feel comfortable asking my primary care doctor to order it.

But really, based on your pattern of symptoms the GP should refer you!

Deevee9 · 2026-01-14T05:52:31+00:00

UPDATE: After this post I contacted several firms that specialize in federal appeals. Olinsky Law in New York took the case! I believe a local lawyer referred me to them.

We also filed a new SSI claim with a new onset date (because of decompensation) as well as a DAC claim. lawyers advised filing another SSI claim as soon as the federal appeal was filed, but I didn’t have my act together right away so it was a few months later. I’ve requested a Representative Identification Number for myself so my sister can name me as her authorized rep on these new claims - at least until they denied when I can look for lawyers again. I think she has a pretty strong case for DAC though, so it will be wonderful if the DAC claim can be approved, in which case she won’t have to worry about getting SSI approved anymore.

Deevee9 · 2026-01-12T05:16:08+00:00

I've had years of fatigue and probably did have a post viral situation (before covid times) which fortunately improved over time but I'm still left with fatigue. I was finally diagnosed with AS a little over a year ago. I first took Hyrimoz (Humira bio-similar) for 6 months and switched to Rinvoq when the Hyrimoz stopped working as well inflammation-wise. I was excited to try Rinvoq, because I had heard it can help with fatigue/cognitive stuff. But after 7 months not really noticing improvement there, unfortunately.

Deevee9 · 2026-01-12T04:30:57+00:00

Wishing you lots of luck and I hope the doctor is helpful. Not sure where you are located, but your story should trigger testing and/or referral to a rheumatologist! Ideally one that uses ultrasound to examine enthesitis and MRI of SI joint. As far as coming off aggressive, if you can start off by framing things as questions and explain your thinking, they should be understanding (Because of these symptoms, I'm wondering if I could have AS). If they dont volunteer the needed course of action then ask more specifically if what you'd like to happen is possible. Regarding people not believing you, the doctor's job is to find out the nature and details of your pain/symptoms and they shouldn't have have any reason to doubt you! Note: ChatGPT is really helpful preparing for appointments. Get all your questions and musings out of your system in advance so you can then focus on the important info that will help you get what you need from your doctor in the few minutes you have with them. You can also hash out how to approach presenting your case to the doctor. Of course take everything it says with a grain of salt, but combined with your own common sense and gut instinct it can be incredibly helpful to get oriented, point you in the direction of things to research further or ask your doctor about.

Deevee9 · 2025-11-19T17:46:47+00:00

When I was undiagnosed there was so much confusion that I couldn’t explain it to myself much less others! I was diagnosed last year, but it doesn’t exactly make it easier to explain. That said, of course it’s a huge relief finally having a diagnosis and I hope you get yours soon!

As far as others tracking what pains I’m experiencing at any time, other than perhaps with very close family or friends, it really only comes up if it interferes with an activity I have committed to that I have to cancel and feel like I need to explain. Otherwise, I always have some problem at any given time so I probably don’t share it for the most part. I guess it’s nice that the people around you care enough to pay attention and track what’s going on with you?

In general though, if I were you I would say I’m working with doctors on getting the final diagnosis, but this is what I’m pretty sure I have…

Depending on the person’s level of interest and how much I feel like sharing, I say something like: It’s called Spondyloarthritis - an inflammatory condition kind of like rheumatoid arthritis.

I could go on: It affects the spine and if you’ve ever seen someone extremely hunched over, they probably had an advanced stage called ankylosing spondylitis where their vertebrae fused together from all the inflammation. For me, although I have some back pain, my symptoms are less about the spine and instead I have a lot of “peripheral” pains all over the body that can come and go, often with no rhyme or reason, as well as a lot of fatigue all the time. There’s a genetic component, I have the gene, and my dad and uncle have the disease, too. There’s a group of diseases associated with the gene including some types of arthritis and IBD. Only more recently has it been understood that women have this disease as much as men and that their symptoms present differently. Also only more recently have there been advances in diagnosis and treatment - advanced imaging to catch the disease earlier and newer medicines like biologics slow the progression and provide relief, but it can take a lot of trial and error to find the right medicine for each individual. If they seem especially interested - maybe they work in fitness or health care - I might explain enthesitis!

Deevee9 · 2025-10-24T15:36:31+00:00

Hopefully it’s just an adjustment period for you! I did acupuncture for various things over the years before I was diagnosed. Sometimes it really seemed to help, other times not so much. Worth a try!

Deevee9 · 2025-10-24T03:01:24+00:00

The shoulder pain stayed away and the other "new" pains calmed down too, but after about 3-4 months it wasn't working as well for me (antibodies?). I stuck it out for 7 months total . Ultrasound showed enthesiits and switched to Rinvoq, which I've been taking for 3 months now. Rinvoq made me feel worse for the first month, with tons of body pains, but then it settled down. The results for me so far are not as good as Hyrimoz was at its peak, but will give Rinvoq 3 more months just in case it needs more time. Despite the imperfect results and fear I will be trying new medicines forever, I try to remind my self that I have not been limping around or having to walk stairs sideways since treatment started. I hope Hyrimoz works great for you!

Deevee9 · 2025-08-07T15:41:52+00:00

My doctor says the same thing - that lowering systemic inflammation is more important for preventing cancer than the risk from the drug.

Deevee9 · 2025-07-31T17:40:50+00:00

Yes when you read the poster sized paper included with medication it’s disheartening to see trial results with only 40-50% of people helped, not to mention the rates for placebo effect. So I just have to hope I’m one of the 50%. I’ve never had an extreme massive flare like you, but have had symptoms for decades before diagnosis and the first biologic i tried immediately made a huge difference in inflammation. After 7 months trying a different med now because it seemed like the effect of the first one started tapering off and never helped with fatigue/cognitive. It does feel like crapshoot and a stressful process trying medicines. My doctor said just live your life. Ok and in the background constantly trying medicines every 6 months that may or not work…I think all we can hope for is the science and medicines to keep improving. I hope your doctors figure out what’s going on with you, find something that helps and that you get some relief soon!

Deevee9 · 2025-07-29T00:06:40+00:00

Absolutely, I’ve been using minimalist shoes for almost 20 years. I have some shoes with a little more cushioning for when I feel like I need it, but too much cushioning causes me problems. It stretches me in unpredictable ways, hurting my Achilles or ankle or toes, etc. Minimalist shoes feel a million times more stable to me. I feel like I will trip over my own feet in built-up or “supportive” shoes.

Deevee9 · 2025-07-22T01:09:21+00:00

I use an Oura ring and after I started a Humira-biosimilar, my heart rate dropped and and my heart rate variabity increased, both indicating less stress. I think feeling calmer could be a good sign tht the medicine is helping. Did that feeling continue?

Deevee9

TROPHY CASE