My story

Hi everyone!
My name is Jon,
I was refered here by the Lifewithlupus.org group, I also belong to LivingwithErthromelalgia.org.
Lots of different “isms” going on…

My story; I started having pain in my hands about 1-1/2 years ago, I thought I was getting RA, so went to a Rheumy in the area, she turned out to be old school, and pretty set in her ways, she refused all suggestions of possible diseases and told me my joints were just worn out, I mentioned that a lot of my pain started in my early 20’s, nope just OA. Luckily she retired, and sent me to a new young Rheumy, another good thing, the new Rheumy was not organized, so didn’t get the report from the old one to sway her thinking, she gave me all the tests the other doctors didn’t bother with. The only test that came back elevated was SLE Lupus. I was started on antimalarial drugs, and improved some. I still had the finger and tow pain, she at that time, got the previous Doctors report and told me that was OA. I countered with requesting X-rays of the hand, knees and lower back, they came back as no OA…

I then started with a Pain Managment doctor for my spinal pain, he eventually ordered a MRI of my lumbar spine, which also showed the SI joints. I requested a copy of the images,(I love to try and find the hidden problems in MRI’s and X-rays) I found serious problems with the SI joint that were missed by the Radiologist. I went to a friend that is a Lung Specialist and asked him to advocate for me with the Radiologist, he came back that the SI joint was normal, but had a additional lumbar vertebra, this was causing the confusion. Still not happy with the follow up, my friend went to the head of radiology at the hospital he worked at, this doctor agreed with the first, and I got chewed out for. To trusting the experienced doctors… Still not satisfied, I went to my Rheumy, with the images loaded on my iPad, I showed her, she immiadiatly asked what the report had said, I just told her to look at the image, (doctors hate me) I pointed out the big holes in the Sacral vertebrae by the SIJ, she said “you better get that checked out”, I reminded her that I thought I was… Anyway, showed it to my pain doctor, he sent me back to my Rheumy, she ordered bloodtests, and here I am diagnosed with PsA. Since the Gene came back positive, she said it is likely the PsA is effecting the spine, instead of As. She also is suspecting bone cancer, (because of the big holes) so she ordered a blood test that suggests it, no I get to go to the Oncologist for a full body bone scan.
I was diagnosed yesterday! I start methotrexate next week. I have been taking max dose of Celebrex for almost a year, she did a US imaging of hands, feet, and SIJ, said the inflammation was high in these areas, (duh)…
Sorry for the long intro, but it just goes to show, you have to be a self advocate when it comes to your health, doctors can tend to take the easy route. My Rhuemy was smart enough to run with the ball, otherwise I would have not been diagnosed.

WOW Jon - What a story.Fist welcome to a supportive environment where a lot of lovely people will give you amazing and honest support and understanding.

Your story is scary and unfortunately you won't be surprised to hear that many of us have similar stories, taking many years to get to a diagnosis.
Here's hoping you hit upon a med combination that works for you and allows you relief from your symptoms.

Cheers Bec

1 Like