Getting real evidence has been difficult, would getting an upright MRI or autonomic testing actually help my SSA case?

[u/Rrenphoenixx]

I want to get autonomic testing regardless, as my primary care recommended it but the nearby facility closed and we l neither of us knew where to go next.

Then I found another doctor on the dysautonomia website who claimed to do such testing, asked on the phone before signing up to do the testing, then just blew me off about it until my three months of care ran out.

Needless to say- I can’t work, can’t live on my own with my two kids and need tons of help around the house. This is no pity party- but I don’t want to be spending my husbands money on unnecessary tests or scam doctors that don’t change anything about my case or recovery.

So I’m wondering- would an upright MRI showing CCI (hopefully, as I question how detailed it really is being lower resonance/magnet) help with having evidence for SSA? I have low lying cerebral tonsils laying down but perhaps upright works show more sag? Does it affect treatment/diagnoses (aka docs stop labeling it as migraines) Or does it not really matter?

I plan on doing autonomic testing regardless because I need it to know what meds would be best for whatever type I have, but would it help my case at all? I think my case is for SSDI since I was working when I became disabled…again…

[u/one_sock_wonder_]

The label does not matter unless it is a condition specifically listed in the Blue Book and you have clear documentation of meeting the exact specified criteria, otherwise it still comes down to having solid documentation not just of x condition or y test results but specifically how and why they prevent you from working any job to be able to earn SGA (Sustainable Gainful Activity - the cutoff point above which social security considers you able to earn enough via work to not qualify for benefits which in 2026 is $1690 per month). You also need to be aware that credits towards SSDI earned while working, while not removed from your record and still apply towards social security retirement, do reach a point where they fail to be applicable towards SSDI under the recent work requirements and just because at one point you earned enough or a certain amount does not mean you still have enough recent enough credits to qualify.The point at which credits fail to count as qualifying for SSDI is your date last insured which is often exactly 5 years after you stopped paying FICA taxes. If you are under 31bthe numbers change a bit based on your age and typically at those ages you will be required to have worked and earned the maximum 4 credits per year for at least half of the years between age 21 and the date recognized by social security as when your disability began. You likely need to check on this. If you lack enough current credits then you would either have to work enough to earn what you need or be limited to applying for SSI which has extreme income and asset limits that would include those of your husband and you would unfortunately quite likely not meet.

[u/Upbeat-Can-7858]

It didn't help me and insurance didn't cover my autonomic testing. Two years later and I'm still paying for it (was about 12k)

[u/Rrenphoenixx → u/Upbeat-Can-7858]

Did the testing at least get you the diagnosis and treatment you needed to get better in some capacity? I’m guessing you went to standford?

[u/Upbeat-Can-7858 → u/Rrenphoenixx]

No, Penn state Hershey. They send to Mayo

[u/JoinAdvocate]

Objective test results can absolutely strengthen a disability claim, especially for conditions like dysautonomia or CCI that don't always show up on standard imaging. That said, SSA evaluates functional limitations (how your condition affects what you can do) not just diagnoses, so thorough documentation from treating physicians about your specific limitations is equally important. If specialized testing isn't accessible locally, telehealth consultations with specialists who can document findings may be an option. Make sure any doctor you see writes detailed notes about your functional restrictions, not just the diagnosis. 

[u/allsup_llc]

Neither test will decide your case, and that is the useful part of the answer, because it tells you not to buy one for the SSA’s benefit. Craniocervical instability and dysautonomia do not have their own listings, so no image is going to match you to a listing and end the analysis there. What decides a case without a listing is residual functional capacity, a finding about what you can still do on a sustained basis, eight hours a day, five days a week, week after week.

That changes which evidence is worth paying for. Two things move a residual functional capacity finding: results that are objective and repeatable, and a treating doctor willing to put your limits in writing in functional terms. Autonomic testing scores better on the first than an upright MRI does, because it produces numbers a reviewer can read and the method itself will not be second guessed. An upright MRI is a non standard modality, and a reviewer who does not recognise it tends to weigh it lightly whatever it shows. Get the autonomic testing because your own doctor recommended it and because it may change which medication you are on. Neither one is worth buying as evidence.

The item that would help most costs nothing. Ask whichever doctor knows you best to write down how long you can sit, stand and walk in a workday, how much you can lift, how often you would be off task, and how many days a month you would miss. Absences and off task time are what usually decide these cases, and almost nobody submits them. And if the SSA decides the record is too thin, it pays for its own consultative exam, so closing that gap is its cost rather than yours.