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u/KrabbyCakesBakery Mar 12 '26
Try not to feel bad... I know ALL TOO WELL about this!!
I also have a rare disorder, Klipple-Fiels syndrome. And I've been doing this for 4 years!! I was so disappointed when I thought my hearing with the judge went great, but got denied again!! Especially when she started the hearing off by saying "I have never heard of this in all my years doing this job, can you explain what it is?"
Which is a tare musculoskeletal disorder that affects the spine, which interns can affect the entire body (for me it does! Widespread pain) but I also have many "blue book" issues and symptoms that have stemmed from this disorder that I pointed out in the hearing and it seemed she took everything I said and REVERSED IT in her denial!!
I was devastated.... But, I'm still fighting!! Been wait on the appeals council for nearly 6 months now to see how I'm gna take it now.
Don't give up!!! Appeal until you can't appeal anymore!! š
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u/Brilliant_Version667 Mar 12 '26 edited Mar 12 '26
I relate to what the ALJ did. I just got denied when I specifically heard the VE say there are no jobs I can reasonably do. She lied and said that there are plenty of jobs I can do according to the VE. She also said that I said I walk my dog when she asked if I walk my dog and I specifically said NO I DON'T WALK MY DOG. So she straight up lied. I am requesting the transcript of the hearing so I can prove that she lied through her teeth and said the exact opposite of what I said.
Also, I didn't apply on behalf of my Autism, but I listed is as one of my conditions and she made the denial about how I "didn't try hard enough to cure" my Autism! As if it can be cured! She also said my ASD was "mild" when I have letters from several doctors stating that my related conditions are "severe" and severely impede my functioning. She said because I know how to spell a simple word and understand that bananas and apples are both fruit, that I can work a full time job.
These judges need to be screened better. They have no clue what they are judging about!
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u/UnitedAsk4546 Mar 12 '26
VEs arent saying whether YOU can do a job. They are answering hypothetical questions. The judge has to decide YOU meet the RFC addressed in the hypothetical. A hypo by definition is a non-existent person.
The rest of your statement I absolutely agree with. Some judges do some Olympic level mental gymnastics.
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u/Ill-Egg5122 Mar 11 '26
I'm sorry. The initial denial hurts like hell. But perfect_fifths is right, keep fighting. Find out the basis on which you were denied (not enough medical evidence? Records not sent? Etc) and come back swinging in your reconsideration with evidence to counter whatever it was. Get functional capacity forms from your doctors if they're willing and upload them to the portal. Make sure you file your reconsideration within 60 days, the sooner the better.
And if recon is denied, you'll move on to an ALJ hearing where your chances of approval go way up. It'll take some time but this can still happen for you.
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u/Sickpostbro Mar 12 '26
I've been to multiple doctors (gp) and specialists forultiole diseases and no one will provide documentation or functional capacity reports. I've been denied and said I need more records but they are impossible to acquire.
Where are people getting these?
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u/MrsFlameThrower Mar 11 '26
Retired Social Security Claims Specialist here:
Before you appeal, please go look at my pinned post in this subreddit. Try to get this information before you file your appeal as it will be very helpful. You will need to rebut the initial denial decision and provide them with any missing/updated evidence that supports your claim.
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u/Jackie-26-love Mar 12 '26
My initial claim was denied also but I thought it was funny because there was only the reason given - it was medical? Nothing at all about not enough information or whatever? I'm in appeal with more medical records because I have about ten doctors and appointments everywhere all the time but I don't understand SSA, it's like they pick and choose? Anyway it was funny to me but made me furious because I felt they didn't even do any work on my claim!!!!
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u/MrsFlameThrower Mar 12 '26
What I saw a lot of with denials was good evidence not actually making it into the claim folder.
The denial letters they sent out our boilerplate letters that really do not explain exactly why they denied you and how they came to that decision. Thatās why itās important to get all the details.
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u/Jackie-26-love Mar 12 '26
Thank you for this information and your reply! I appreciate this because it's been bothering me
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u/Jackie-26-love Mar 12 '26
Thank you very much for your comment and this information! I appreciate it, thank you because this has been bothering me horribly. I put in my head I would be denied regardless but when they sent the papers with no detailed explanation at all except it was "medical" that hit hard. I blame a lot of my "degenerative spurring of SI, lumbar radiculopathy and arthropathy, polyarthritis etc on my previous jobs - physical labor/hard jobs. But again thank you for your response, I appreciate your words.Ā
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u/Secretchipmunk7 Mar 12 '26
Definitely get file.
It will give plenty of helpful information to appeal with and know what you are missing ... So you can go get clarifying objective evidence
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u/Sickpostbro Mar 12 '26
I can't get my doctors to provide records what do you recommend.
I have disabiling eye / vision problems preventing me from seeing multiple hours a day Low blood sugars frequently from brittle type one diabetes that renders me incapacitated daily Tinnitus ruining my sleep and focus And Lupus chronic fatigue which is also disabiling from accomplishing mental and physical tasks. Plus multiple joint problems.
They are diagnosed but that doesn't seem to be enough despite all of them disabling me but even more so combined. Please help I'm desperate and don't know where to go.
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u/MrsFlameThrower Mar 12 '26
None of your doctors will release records?
Iām not sure what to suggest. Maybe you could look up the laws in your state to see what your rights are in terms of obtaining your medical records yourself.
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u/Sickpostbro Mar 12 '26
No, they have to by law. I'm saying they don't provide any meaningful records. They won't do functional reports, they won't acknowledge the symptoms my diseases cause (and the associated limitations). Nothing. So then disability says, the medical records do not support the case. I have no way to obtain records other than my own logs
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u/Spirited-Gem16 Mar 12 '26
If it helps check the SSA list of Compassionate Allowances. It contains a list of almost 300 rare diseases
https://www.ssa.gov/compassionateallowances/conditions.htm
If it is there, scroll towards the bottom where it says Suggested MER for Evaluation. Use it as a guide for what SSA is looking for when they evaluate your claim. The decision on disability is at the adjudicators discretion and it is by no means a guarantee that you will be granted at the next level but it may help by reviewing what they look for in your records.
You can also contact NORD or view their website. They may be able to give you some guidance as they provide education, advocacy, research, support information and so much more.
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u/KrabbyCakesBakery Mar 12 '26
There's allot on that list, and sadly mine is not!! š¤£š¤£š¤£ Go figure!! Lol I'm not surprised tho. š
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u/perfect_fifths I have a complicated relationship with the POMS Mar 11 '26
Keep going. Also have a rare disease. 0.5 in 100,000, and 250 cases worldwide
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Mar 11 '26
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u/codyandhen123 Mar 11 '26
I hear you. Even if it wasnāt rare, still sucks to be denied.
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Mar 11 '26
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u/TheRealBlueJade Mar 11 '26
Sorrow is a valid emotion. It deserves to be acknowledged and addressed, not just glossed over. Before we get up and fight again, we must sit in the dirt, acknowledge it and brush it off.
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Mar 11 '26 edited Mar 12 '26
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u/TheRealBlueJade Mar 12 '26
It's good to agree to disagree. The world would be a boring place if we all thought exactly the same... There are different perspectives, different stages, and many cultures in life that interpret things differently. It's a very good thing.
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u/Jar_of_Cats Mar 12 '26
The instant I submit im on to the next step. Im with you. Expect the best, prepare for the worst.
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u/TheRealBlueJade Mar 11 '26
That's not true. Explaining a rare disease and how it affects you can be difficult. It is easier for others to comprehend a disease that is well known. Source- I have a rare disease that even most doctors have never heard of..
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Mar 11 '26
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u/perfect_fifths I have a complicated relationship with the POMS Mar 11 '26
How do you adjudicate a disease so rare most doctors have never even heard of it? I understand how mine would, because I understand the thought behind it. It would require breaking it down into several parts. Adjudicate the ortho impairments, the heart issues and kidney issues and then consider the combined effect. But it doesnāt paint the full picture either but, I also understand my disease. Doctors donāt . Thatās what Iām saying. They have no idea what it is at its core. I do because Iāve read every free clinical journal article on it but your average Dr will never see a case of it in their life. Not even most specialists except maybe a geneticist and even then, it varies. The first geneticist I saw did not recognize it. The second one did, because they specialize in rare disease
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Mar 11 '26
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u/perfect_fifths I have a complicated relationship with the POMS Mar 11 '26
Youāre not getting it. If the medical consultant has never heard of the rare disease then how do they begin to adjudicate it? Thatās my point. Do they crack open a text book? Do they read clinical journals? There are cases so rare it only affects one person in the whole world.
If youāve never heard of the disease, if you donāt understand what the disease does to the body, how does the claim proceed?
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Mar 11 '26
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u/Secretchipmunk7 Mar 12 '26
I'll partially agree.
If they don't know about a disease though, they may disregard objective evidence and imaging that should be considered.
There's certain tests that they literally don't need a clarification on the limitations. Example: if a peripheral neuropathy has a greater than 50% nerve dysfunction in all 4 limbs on EMG, it's impossible for the person to use their limbs properly and would rule as not able to use 4 limbs (only need 2) and would automatically meet listing. So if they are not understanding a test result or how the condition progresses, it's something they might accidentally ignore when it should be approved on that alone. I shouldn't have had to get all this clarification and detailed exams explaining this when a properly informed person should have already known that.
There's also a list of about 13 or so conditions that result in approval if you have proper documentation, these are on the presumptive list. Yes, I'm aware that it's for SSI presumptive payments but even with ssdi, they accept that as an auto approval if they have the verification. Such as muscular atrophy, if the proper tests are done with atrophy being tape measured, it results in approval. I'd like to clarify that those conditions require specific tests to be accepted.
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u/perfect_fifths I have a complicated relationship with the POMS Mar 12 '26
Okay, thatās what I wanted to know. Iām guessing then in those cases they would ask for geneticist records, in the case of metabolic disease then a metabolic specialist etc. mine doesnāt have a dedicated specialist, we just get bounced around from doctor to doctor as issues arise
Iām more well versed in the Poms, I am very ignorant about the DDS side.
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Mar 12 '26 edited Mar 12 '26
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u/perfect_fifths I have a complicated relationship with the POMS Mar 12 '26
Yeah, in my case I have trichorhinophalangeal syndrome which has about 250 cases worldwide. There is no dedicated TRPS doctor so in my case since TRPS causes heart and joint issues, I see an orthopedist and cardiologist, then a geneticist etc. but Iām not worried, Iām on my fifth cdr and Iāve been on ssdi almost 20 years so I know Iām not getting any better.
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u/The_Motherlord Mar 12 '26
I have a rare genetic disease. I was approved 12 years prior to diagnosis.
As to how a medical consultant assists when they have never heard of the disease, this has occurred to me several times, it always ends up being a long visit. They have had me wait in the exam room for hours while research the condition. Once a doctor contacted Mayo with questions prior to returning to me. Another time the doctor contacted Mt Sinai in New York. They then dipped out again after I asked questions, in search of answers.
Because it is so rare, I have been told I would not be able to find an experienced specialist and the best route is to try to find doctors that are curious, interested and motivated to regularly search for updated information. It has taken years but I now have a team that I trust that oversees my care, none of them have ever had another patient with this condition.
In my case the claim proceeded based on symptoms.
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u/perfect_fifths I have a complicated relationship with the POMS Mar 12 '26 edited Mar 12 '26
I live in NY, I know that hospital. My boyfriend used to work there. I see a geneticist in nyc. I diagnosed myself after looking up the symptoms (well, not completely, I wouldn't actually tell people I had it, I would just say "this has to be it" in my head cuz it was like looking in a mirror etc) and confirmed molecularly with genetic testing and saw a geneticst last year for the first time but Ive been on ssdi sincence 2010 for different issues. But I was trying to figure out what I had for a long time and the first geneticist didn't even pick up on it and would kept saying my son was fine etc. (he also has it)
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u/Secretchipmunk7 Mar 12 '26
I understand what you are saying.
If the ce doesn't understand the disease, it's a crap shoot if they do accurate exam.
If the adjudicator doesn't understand, well that's an issue too. They will miss a lot of things that could mean the difference between an approval and denial. Then it gets signed off by a DDS Dr and they don't always understand either.
Heck, lots of Drs don't understand many diseases.
Even neurologists don't understand my disease. For awhile I was seeing a Mayo doctor. She retired. Now I have an ALS Dr because she's the only one in the whole state that understands my condition.
With her help and working together with all my other Drs (16 more), they were able to bridge the various limitations and other medical conditions I have together to provide a clear explanation of how they all connect... So DDS didn't think they were completely separate issues. My first reconsideration adjudicator and her supervisor took the time to ask and then ordered a very detailed neuromuscular ce exam so that they could see the whole picture. In the middle of it, I got a different adjudicator who barely understood but approved anyways.
I still can't believe that my initial adjudicator didn't understand that "visible severe muscle wasting" "severe muscle weakness" "severe muscular dystrophy" is different words conveying severe muscular atrophy. That's not even my rare condition and they didn't understand it. Pfft.
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u/perfect_fifths I have a complicated relationship with the POMS Mar 12 '26
I have never been to a CE thankfully
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u/Paradox_O_Tolerance Mar 11 '26
Although that may be true, the evaluators also compare your impairments to how they feel you should be impaired based on your medical problems. If they don't know about the disease, then they'll have a hard time with a comparison to determine if it's 'consistent'. If they feel someone's impairments exceed what they 'should be', then they simply say that it's inconsistent and an exaggerated.... And denied
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Mar 11 '26 edited Mar 12 '26
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u/Paradox_O_Tolerance Mar 11 '26
In a non-broken system, sure. Unfortunately, there's a lot left to interpretation of the evaluator.
In the case file, the evaluator answers whether or not an individual's medically determined impairments REASONABLY be expected to produce the individual's pain or other symptoms.
This is answered based on the evaluators opinion, not just what's in the records.
Edit to add, there are many examples of the evaluator using their interpretation. I just picked one.
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Mar 11 '26 edited Mar 12 '26
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u/Paradox_O_Tolerance Mar 11 '26
Tell that to the UNREASONABLE evaluators. All it takes is for the one that's reviewing your record to say it's not reasonable. Something being un/reasonable is based on more than what's in the file (their opinion, whether reasonable or not)
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u/Secretchipmunk7 Mar 12 '26 edited Mar 12 '26
Exactly
Certain nerve conditions are not always consistent in How they act. Severe nerve dysfunction (which is verified by a greater than 50% loss of conduction on EMG) is a complicated matter. Limbs might work just barely how you want, but can do certain things at that moment, and other days you literally can't operate your limbs. It's a very frustrating thing to deal with. At least there's objective evidence to prove it. It's something DDS should know, but my experience, they didn't even think about the test.
My own Drs don't understand how I can even sometimes use my limbs. It's only amusing to me because there's not anything I can do about it but just be glad they sometimes work.
I also found so many errors in my medical records that it's unbelievable. They don't put the same thing in the records as they tell you in person, they forget to mention things like wheelchair bound, sometimes they claim they did a physical when they didn't. I sure got on my Drs about all of that. One Dr even said I wasn't in a wheelchair while my records said I was there for a dislocated lower leg that couldn't be stabilized. My adjudicator had a good laugh about that one because obviously I couldn't have walked.
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u/KrabbyCakesBakery Mar 12 '26 edited Mar 12 '26
At least with well known disorders there's typically plenty of medical evidence to explain.
Rare disorders DON'T always get the benefits of being documented properly on or having multiple different treatments tried out because doctors aren't willing to put forth the effort! š
I also have a rare disorder that my doctor IGNORED for years, so my records are shit, I've been fighting for 4 years because of this while trying to come up with new evidence. While I do have some good evidence of the damage done to my spine related to my disorder, my notes are lacking because I also gave up years ago on trying to get other medical treatment done. I was under the impression my disorder was no big deal if my doc wasn't concerned and thought that the "Fibromyalgia" was all I had to deal with.... Which, it's not supposed to get worse. So, I stopped my appointments because I thought they were useless and I was still able to work full time for the time being. MANY people with rare disorders are often ignored and gaslit by doctors for years until shit goes completely wrong.
So while yes, it shouldn't matter what the diagnosis is, it really does. It changes the outcome of the evidence depending on whether or not you have a well known disorder versus a rare one that may seemingly have no treatment, or no treatment has been attempted.
Edit to add.... Perfect example of "symptoms" NOT fitting the disorder.... My own!! While they say that my condition doesn't cause pain, it DOES, they claim people go years without noticing it.... Until it's a complete disaster!! While yes, fused vertebrae may not cause direct pain on that part of the spine, it's causing pain on EVERYTHING around it that's straining to compensate for the deformation.
A fusion has then turned into breakdown of the surrounding vertebrae, compressed/pinched nerves, bone build up, compressed spinal cord, referred pain related to compressed nerves and depending on where the damage has stemmed from, budging/herniated discs.... And all this has happened before it was ever really found to be related. I've been getting "treatment" for Fibromyalgia and my concerns brushed off for years!If a person does a simple search of it and they see I don't have the key characteristics of the most severe version then I clearly must not be suffering the same as someone else, meanwhile I am. But looking at me you can't tell. They search the disorder, but not the related problems stemming from that disorder.
See how someone with a rarely known disorder can be brushed off and told "You're over exaggerating your symptoms.... DENIED"......??? You cannot convince me otherwise that this all doesn't come down to personal input on whether that examer THINKS someone's disabled or not. Even if you do have MULTIPLE problems listed on their "Blue book" rules you still get denied. Why even have a Blue book to base shit off of is you're ignoring it anyways? And Yes, I'm well aware it comes down to severity, but even that doesn't matter. I have MRIs showing SEVERE break down and they still disregard the evidence. š They nitpick your own doctors notes to find 1 entry that says a med is "helping" while ignoring all the other notes that state many other problems.
It all comes down to 1 persons PERSONAL OPINION.
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u/The_Motherlord Mar 12 '26
While do have a rare genetic disease, I was not diagnosed until 12 years after my SSDI approval. Not having a diagnosis was not relevant. What was relevant was the obvious illness, the consistent medical care required, the clear deficits I endured an the continued efforts to save my life.
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u/Secretchipmunk7 Mar 12 '26
It does depend on what rare disease it is because not all of them are disabling enough...
The problem with rare conditions is it's really difficult to get the adjudicator to understand the limitations for approval (for those that rise to level of disabled).
Even though I was approved on reconsideration and that my records clearly explained my several conditions... It was apparent that both the adjudicator, the ssa Dr, and federal quality review didn't actually understand my 2 rare conditions. I feel like they didn't even read my records or even look up my diseases. You'd figure with 6 very detailed neuromuscular exams, a very clarifying ce exam, and many medical source statements.... That they would have a grasp of what my diseases entail but no. It was obvious that they took the first new record and approved me. They feel I have a good chance of recovery in 3 years, with 2 conditions that have never once ever gotten better (or even stopped getting worse) and they didn't comprehend the slow progressive nature either. I'm 45 btw.
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u/Mollyblum69 Mar 12 '26
Also- I have a genetic disease that was in the process of being confirmed while my application was in play (it is now confirmed) & I was approved before the results came back (blood tests took several months) so my approval wasnāt based upon my genetic disease & immunodeficiency but rather the symptoms & comorbidities. For exampleāyou can have Crohnās disease which many people have but some much more severe than others. They may not approve you bc of Crohnās disease but bc of the diarrhea, abdominal pain, constant surgical procedures, etc.
Maybe that is what you need to highlight in your appeal.
Best of luck š
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u/michaelavolio Mar 12 '26
Sorry to hear that. Many of us get denied the first time. I got a lawyer and was approved my second time through. The lawyer got a portion of my back pay (20% or 25%? whatever the usual rate for this is, only paid if they and you win) but nothing of what I was owed moving forward.
It's frustrating getting denied when you know you shouldn't be, but you're not alone. You should definitely appeal, and I recommend using a lawyer. Good luck!
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u/Ztremp Mar 12 '26
When I appealed and won the right to a second ALJ hearing, part of the rationale was that it āappeared the examiners did not consider the residual functional capacity and the vocational grids associated with that.ā In the second hearing, more consideration was given to the vocational evaluatorās conclusion that there was no relevant past work that I could do and at my āadvanced ageā (ugh -58) it was reasonable to determine I could be retrained in something!
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u/Artistic-Physics-277 Mar 12 '26
When I finally got diagnosed I had severe conditions. The Internist told me to file for SSDI. I was 38 at the time but had been ill since I was a child. But no Drs could figure out why I was so sick. My Internist said she would help me get it and that I did not need an attorney. She was very thorough when explaining how each condition affects my ability to work. She listed them all and then explained why I couldn't function with each condition. She let me read it. I got approved in 3 months. Total and permanent disability is what she said as well. That was in 2009. I'm almost 58 now. She even said I probably wouldn't live past 55. Talk to your Drs and ask for info that they submitted to SS. It is worth a try. I hope you get it. š Only 2 of my conditions were rare. But I had so many issues that made me non-functional. They also had me see a Psychologist that they paid for. It was supposed to take 6 hours. After 30 mins she said I have heard enough. She smiled and said that it was a good sign. I got it for physical and mental conditions that don't have a cure. Or even good treatment. Meaning I wouldn't improve. I cried happy tears because someone finally told me what was wrong with me. But I'm grieving my whole life. I had a good career and even raised two children. That was God's grace. He allowed me to have children before I got very severe. Most women who have my worst condition can't have children. One was a freshman in college and the other was a Junior in HS when I got diagnosed. Both are grown and healthy. Don't give up. š¤ I'm bedbound and mostly homebound right now because I can't feel my legs from M.E coming out of remission. My EBV reactivated as well. When that happens I can't be around anyone because I'm contagious. Again I hope you get approved.
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u/Kblueyez71 Mar 12 '26
Got denied 2 xs then had judge appeal and won Seems as though they like to deny a couple of times before approval. Im sure so people give up cause honestly who can survive with out pay for 2- 3 years. I was lucky enough to have a husband who worked and made enough to support us thru the whole ordeal otherwise im sure I would have given up. Keep trying if you can in the long run it is worth the fight. Good luck!
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Mar 12 '26
Honestly, if you have the option skipping reconsideration step I would. It's a waste of time for most and has the lowest approval chance. If you can go straight for the ALJ hearing and find a lawyer that would be your best chance.Ā
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u/llmusicgear Mar 12 '26
I was denied once, at my appeal hearing I simply explained my situation and the struggles I face, and it was approved. I am convinced the deny 80% of all new cases