My journey started at the age of 25 when I went to an orthopedic surgeon due to back and hip pain. I had seen this surgeon before and they had recommended physical therapy (PT) for the spondylosis in the past. It had been a few years, but I expected the same outcome very painful PT for my back to help my muscles support my spine. What actually occurred was a shock to me and the surgeon who took my x-rays; I was diagnosed as an arthritic. I remember the moment very poignantly as my doctor stood there looking at my x-ray she shook her head and said "What is that? That's not supposed to be there. The lumbar spine shouldn't show degeneration until the 80s and rheumatoid arthritis shouldn't start there." My spine in lumbar vertebrae 1-3 had what appeared to be rheumatoid arthritis nodules and degeneration. My doctor ran a series of tests for rheumatoid arthritis (RA) which came up negative, and put me on a NSAID. She was very pregnant and told me if the back pain did not clear in 6 months after she returned from maternity leave she'd send me to a rheumatologist, and if it worsened I should take myself. Well you can guess what happened it did not get better so at her advise I went to a rheumatologist.I thought that rabbit hole would be simple new doctor and fixed with medicine easily, I had no idea how far that rabbit hole would really go.
I chose haphazardly a rheumatologist who happens to now be possibly the best in the Northern Virginia area which was fortunate because my situation took seven years to diagnose fully. When I first arrived they reran all the RA tests. He also ran a special MRI on my SI joint, and an HLA-B27 gene test. HLA-B27 is a gene associated with another form of arthritis Ankylosing Spondylitis. This type of arthritis starts in the spine but instead of nodules it fuses the spine over time. The RA tests and HLA-B27 came back negative. The MRI came back with inflammation. I was diagnosed with unspecified spondylarpathy. My NSAID was changed and I was put on a watch and wait status.
Two years went by and then I had something unfortunate happen I was glutened, and I got sick back to back. I am a celiac so I cant eat gluten hence I got sick, then with my immune system out of wack I picked up an opportunistic infection. This triggered my arthritis to move bilaterally to both hands. My doctor ordered tests again, my white cell count was off but everything else was fine. Not trusting the tests I was put on steroids and an antimalarial. I was re-diagnosed with Celiac Poly Arthropy and Unspecified Spondylarpathy.
Over the years these movements continued but without me getting sick so it was changed to Refractive Celiac Arthritis. In the process I was diagnosed with multiple secondary disorders: chronic costochondritis, fibromyalgia, peripheral sensory neuropathy, and raynaud's phenomenon. A few months before I turned 30 I started chemotherapy for arthritis. I went for an unsuccessful second opinion when this treatment did not take hold. My original doctor disagreed and continued to watch and wait. The most startling discovering with the second opinion was a RA test came back on the borderline of positive, and my second SI joint MRI showed progression. So we waited and I continued to have problems with arthritis, tendon issues, and cartilidge problems.
In December 2013 I had convinced my doctor another opinion needed to be brought in. We also agreed it was time to consider higher medications but he felt he could not make that decision without guidance due to my tests being so unusual. While running a new test for RA that I came up a very low positive on, and other panels again I began to gather information on Universities that maybe interested in a Refractive Celiac Arthropy case. These cases are so few most places have never seen or heard of one.
During this time in December I had a toe nail grow into my foot and I was frustrated. My toenails had been an issue for years and had been seen by two podiatrists, my personal doctor, and a nurse practitioner in the past. I had been told they were not fungus, but it was toe nail overgrowth from trauma, and possibly my medications. Despite these opinions I was so frustrated after at home surgery for the toenail I got online and found psoriatic toenails looked shockingly like mine. I went on a psoriasis forum and asked questions. During this time I was trying to figure out how I had nail symptoms and no skin ones as I'd always thought of psoriasis as a rash. It then dawned on me going through photos that I did have skin psoriasis and it had cleared over two years before when they started me on methotrexate. My skin problems were extreme dry skin that had cracked and bled if I scratched it I'd get thick patches. Then out of the blue a friend of mine from an RA forum messaged me asking to see the toe nails I sent her a photo, and she sent one back our toe nails were the same. I immediatly made an appointment with a dermatologist after researching the ones in the area and my rheumatologist. The rheumatologist took one look and said "That is a game changer for you, I wish I'd known about this sooner." He was very happy that the appointment was in the next week. I went terrified I'd get kicked out of the dermatologist's office to be diagnosed in 15 minutes based on 2 bad toenails, my history, and a family history with psoriasis, and psoriatic arthritis.
December 30th I saw the rheumatologist again and the official diagnosis was made Psoriatic Arthritis (PsA) with Refractive Enteropathic Celiac Arthropy. I started remicade early February after my insurance cleared the drug. Thanks to two bad toe nails a middle man was eliminated and I am finally on the road to recovery. The lesson learned here is never overlook something seemingly so simple as dry skin, and angry toenails they could be the key to a much bigger issue. I could have been on higher end treatments much earlier had one of the prior doctors connected the bad toenails, and my ashy skin but since PsA is often mixed and I had enough issues no one thought that it was yet another autoimmune issues.
Sadly my seven years to diagnosis is not uncommon. These diseases all have common lines despite distinctly different behaviors. You can also have cases like mine where something never seen before occurs psoriatic arthritis with refractive celiac arthropy. Refractive celiac arthropy is seen with RA in 90% of cases and AS in 10%, it is unknown if another case has been seen with PsA. There are less than 30 known cases of refractive celiac arthritis most cases shut down when the diet is started for celiac. This is why I am starting this blog to help others through sharing the pieces of my story others maybe able to relate, and I can generate awareness for these diseases.
Captain Angry Bones
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