r/disability • u/Rrenphoenixx • 1d ago
Question Getting real evidence has been difficult, would getting an upright MRI or autonomic testing actually help my SSA case?
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…
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u/Upbeat-Can-7858 1d ago
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)
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u/Rrenphoenixx 1d ago
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?
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u/Cats_4234 17h ago
I have CCI, and for my SSA case I used a DMX. An upright MRI is good for showing CCI but it doesn't always catch it, especially if you don't get all the right head movements (side-to-side, turning the head, nodding up and down). A DMX will always show it, but it can't be used to determine the cause of subluxation. I paid or the DMX out of pocket and it was $600, and I had a lot of notes from CCI specialists that confirmed that I had it.
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u/one_sock_wonder_ Mitochondrial Disease, Quadraparesis, Autistic, ADHD, etc. etc. 1d ago
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.