Getting a diagnosis

chloe8596 Member Posts: 4
edited 8. Jun 2021, 05:54 in Living with arthritis

About 14 years ago, a doctor had xrays of my spine taken as I was experiencing back pain, and he said it looked like I had arthritis in my spine. Nothing about that was written in my chart and I kind of forgot about it since i would rarely see doctors as doctors haven't been very helpful in my experience.

This past winter, I had horrible pain in my toes and noticed that my toes were all hugely swollen. The pain got so bad that walking is difficult. My regular doctor suspected it could be psoriatic arthritis and he gave me a referral to a rheumatologist.

I have the rheumatologist appointment scheduled for three days from now and want to be sure what I'm getting myself into. I worry about the costs associated with trying to get this diagnosed, because insurance in the United States is terrible, and they will rip you off any way they can. I'm assuming xrays would likely be covered by insurance but I'm guessing something like an MRI would not be fully covered and could potentially be a huge out of pocket expense.

For those who received a diagnosis of arthritis, how were you diagnosed? Was an MRI necessary? Was it hugely expensive with several doctor visits needed to get to a diagnosis? I know I should put my health first, but I just got most of my debts paid off this year after working hard to do that for the past 10 years. I worry about accumulating a bunch of debt now due to trying to get my arthritis diagnosed. Any information on this would be helpful.

Also, one of the reasons I would like a diagnosis is, if I ever get to the point where going into work is too difficult (which seems possible since currently just walking around in my house is difficult), I want to have a diagnosis to support any disability claims. For those who have claimed disability, was this very difficult to do? Were you required to take prescription medications in order to qualify for the disability? Most of the drugs prescribed for psoriatic arthritis are so toxic and have such bad side effects (from what I've read) that I would be scared to take them, but I don't know if you would be required to take them before I could legally claim disability.

Any comments or suggestions are appreciated.


  • Ellen
    Ellen Moderator Posts: 1,565
    edited 8. Jun 2021, 07:37

    Good morning @chloe8596

    I see you are about to see a Rheumatologist for the first time for suspected Psoriatic Arthritis and have lots of queries.

    Unfortunately I do not know very much about the American health care system as we are very fortunate here that we have the NHS which provides all of our testing free of charge even if we do have long waiting lists at times.

    This will help a little at least with what tests might be done:

    As will this although again it is UK specific I would imagine there will be an overlap:

    I can't help much with your welfare benefits either so very sorry, but here they are based on what help you need rather than what medications you are taking if that helps at all?

    I really don't want you to be too frightened about the medications you might be offered though. Many many of us on here take them and we do just fine on them.

    Please do come along in chat to our members though. There is so much experience here a fair few members have Psoriatic Arthritis and will be able to offer some reassurance to you.

    Best wishes


  • stickywicket
    stickywicket Member Posts: 27,686

    Hi Chloe. I feel for you. I have, on the one hand, longstanding RA and, on the other, a son who is now a US citizen so I understand the medical worries a bit.

    My belief is that the costs all depend on the medical insurance package you have. My son once had to pay for his own stitches as his, then, package didn't include sports injuries. He was told a couple of years back that he should have a scan every 6 months to check that a lesion on his liver wasn't growing. But this cost $200 a time and isn't covered so, as he was also told it was probably just a scar from his childhood meningitis, he doesn't bother. Over here, we have free-but-long-awaited appointments. A combination of the two systems would be nice.

    I did find this link to Johns Hopkins - one of the best medical schools in USA if not the world. I hope it helps.

    I'd just add that, if you do have PsA, it's much better to ignore the scary stuff and take the meds. Meds problems are a slight possibility. Untreated PsA will do more damage.

    Good luck and do let us know how you get on.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • chloe8596
    chloe8596 Member Posts: 4

    Thank you very much! I appreciate your comments. Just feeling a part of this community is already very helpful : )

  • stickywicket
    stickywicket Member Posts: 27,686

    I'm thinking of you. Hope it goes well.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright