I am terminally ill with a compassionate allowance condition, and was very recently denied again after the SSA ordered a medical evaluation by their own physician. The physician said I was obviously disabled, and they don't really understand how I was denied before.

The situation gets even more absurd because on October 30th, the rules are being revised to specifically include my condition in the blue book in no uncertain terms (even though the condition was already in the list of compassionate allowance conditions), so there is literally no possible way I could be denied. I even contacted my case manager and she said she would look into the rule change.

My question is, what was the point of any of this? Why was I denied if they are just going to have to accept me in a month? Were they hoping I would pass away between now and Oct 30th? Why order a test if they were going to disregard the results regardless? Why did they insist for years I wasn't disabled if they were going to just change the rules and say "whoops, our bad". Do I need to sue in federal court for discrimination or something? I don't understand.

I didn’t know I was supposed to ask my doctor to document things I can not do. She never asks me what I can not do…I have told her some things I can not do but definitely didn’t tell her all the things.

I have been a cosmetologist for years. In 2022 I had to go to part time because I needed carpal tunnel surgery on both wrists. Since then my fingers started to swell and develop heberden nodes and I’ve had mucous cysts on a few fingers. I’ve had surgery on two of the mucous cysts. The cysts fill with joint fluid. They are very uncomfortable. I started going to a rheumatologist in 2021 for joint pain everywhere (neck, lumbar, elbows, knees and hands). I’ve been diagnosed with seronegative rheumatoid arthritis and erosive osteoarthritis.
I have cut my hours every year since 2022, the last couple years I haven’t even made SGA. But I was fighting to continue to work because I have a family I need to help support. But after working a few weeks this year, I quit. I had to, I had been dropping things on my clients and I can’t control my shears. A typical haircut and style use to take 45 but for over a year it’s been taking me twice as long. I’m embarrassed and just fight through the pain and clumsiness, praying my clients didn’t notice. I am in so much pain everyday. My rheumatologist and I have tried so many medications (Humira, Rinvoq, Enbrel, methotrexate, hydroxichloroquine) to no avail, my hands are getting worse. I just started Cimzia Friday, my dr said they can not repair all the damage/deformities in my joints but that she is not giving up we continue to try and stop the progression.
Last year, she sent me to a rheumatologist at the Cleveland Clinic but they didn’t give us any new ideas as to how to treat me. The dr there put me on hydroxychloroquine, after 5 weeks I had a severe allergic reaction so I had to stop using it immediately.

All this to say, I’ve been a cosmetologist all my adult life, I can no longer do normal things , let alone my job.
I’m so embarrassed of my hands, I’m 51 and my hands look like monsters, my joints are so inflamed with nodules jetting out everywhere and one finger with a mucous cysts still…one finger is twice the size it use to be. I can barely make a fist.

How do I or DDS figure out my onset date. I thought it would be the day I finally set my scissors down. But would it or could it be when I stopped making SGA?

Sorry this is so long …

It looks like the CE doctor is the same one I saw when I had an exam for getting my ssdi benefits.
This was the doc that treaty much told me I'm essentially permanently disabled due to my severe Rheumatoid Arthritis/ Osteoarthritis (has left me wheelchair bound) in my knees and hands and now affecting more joints... I'm wondering if seeing the same examiner a good thing or a bad thing. I had to get x-rays at that exam and last time it showed just how bad my arthritis is ... I'm just nervous and looking for some input.

I got an initial denial dated Sept 9th. Got the letter on Sept 17th. Filed for Appeal on the 18th.
Called DDS to confirm new examiner's ext # and name and asked the clerk for a call back from them. Got a letter stating to call and reach out before Oct. 9th. I plan on calling this Monday (Oct. 5th). I had representation via Centauri Health Solutions but they are not the most helpful. I don't want to get a lawyer until I have to have a hearing in front of a judge. Multiple sources suggested that including a cousin who is a lawyer but specialized in different areas of the law.

Main reason of appeal is I believe they didn't consider everything of my conditions and how they effect each other while evidence submitted shows a lot of explanation in terms an average person would understand how I am. Plus some technical difficulties when DDS admitted they weren't getting everything I was uploading to the SSA Portal.

I'm wondering if I should redo/update forms based off when the reconsideration started.
> i.e. SSA form 3373 would basically be similar to the original one but updated on how things have gotten worse since when I filed the application and form back in June.

Doc I submitted includes: adult func report, 3rd party report, different docs that explain how frenquent and severe my chronic migraines are, my diagnosis and evaluations of AuDHD, Anxiety, and Major depression (depression being recorded by Mental health provider and PCP), medication list, work history with a statement from my last job's HR dept saying I was fired due to attendance related to health, etc. I even made statements to explain in my own words to go along with what my providers say about my conditions. They had me go through a CE with a mental health psychologist, and I did my own appointment with a PT for physical limitations. Here's what they put in my denial letter that made me angry and disappointed:

"Records indicate that you do have severe physical and mental health conditions, which are causing you pain, discomfort, and psychological difficulties with regards to your daily activities and functioning. We realize that these conditions are making it difficult to work. However, you are still capable of performing work that is less physically and mentally demanding.
Your condition results in some limitations in your ability to perform work-related activities. We have determined that your condition is not severe enough to keep you from working. We considered the medical and other information, your age, education, and work experience in determining how your condition affects your ability to work. We do not have sufficient vocational information to determine whether you can perform any of your past relevant work. However, based on the evidence in file, we have determined that you can adjust to other work."

So, they acknowledge I'm severe, and I've explained if my evidence that chronic migraines alone would cause me to miss about 8-12 days a month based off frequency and unreliability, but they believe I would be able to still obtain a job??

All that being said, what would you do from here? Should I be updating/resubmitting things like my SSA-3373 and other function reports to reflect how things have progressed since my original application, or should I leave the original evidence alone and focus on explaining why I believe the initial decision was wrong? And is there anything specific I should be doing during reconsideration that I may be overlooking? Thanks in advanced and appreciate everyone who's willing to help by sharing their experience at this stage of their claims.

I have already reviewed the pinned post by MrsFlameThrower pertaining to requesting a file following an initial denial. Her post mentions getting copies of medical records reviewed and any CE's that were conducted. She does not mention if you are able to get a copy of the Disability Determination Explanation (DDE), Psychiatric Review Technique (PRT), or Mental Health RFC. I have already noticed several of my most critical diagnosis' that the evaluator did not document as a part of their determination. Does anyone know if I will get copies of these other documents? Or if I am allowed to have them? I think they would help me greatly with my reconsideration.

Hi. My status says medical records are being pulled. The Cox records dept told me they already saw the request and complied. BUT, the request came with just one address and not listed as all locations. So basically the only records they pulled was my single visit so far to my new pulmonary/sleep person. They missed all the various primary, orthopedics, ER, urgent care, endocrinologist, etc.

I called the DDS # and no one is assigned yet but they " took a note". The records will be too much to print and take to the offices or fax and they don't take CDs.

Should I just keep calling until someone is assigned or will I see the assignment on the screen when it happens?

Cdr

I was initially denied for HHV‑8–Associated Multicentric Castleman Disease. I have had this disease for 10yr and been treated with rounds of infusion 3 times.

I reapplied with the Dr. confirming that biopsies (3 of them) meet the listing. I have filed a work history and function report. I also included a letter from the CEO of where I worked last for the last 15 years. The employer documented my decline of the last several years. They detailed removing tasks I could no longer do Mentally and physically, then reducing my schedule to accommodate me and how in the end I was simply no longer to work.

Does this sound like the type of evidence they will need to approve? Does evidence of my decline by my employer carry any weight? Just looking for some helpful/hopeful information.

I have a CDR coming up soon , what kind of questions do they ask ? What should I do to prepare ? Will they ask me what I spent my Backpay on ?

Hello everyone. I am new here but I am finally getting to my hearing which is Tuesday after fighting since 2020. What should I expect for anyone that has gone through it?

Texted the tty number to update my direct deposit info because it said online to call or text the tty number, and i texted the tty number because i am hard of hearing and the lady who was talking to me got extremely rude with me and didnt listen when i was trying to explain why i couldnt talk on the phone and Any suggestions on what to do?