Delay to Diagnosis

Our country’s Axial Spondyloarthritis Association sends out info about their global meetings. Through that, I found the British NASS. Ankylosing Spondylitis (Heresfter referred to as AS in my blog) is one of the types of Spondyloarthritis… They say that diagnosis takes around eight years and is around two years longer when it comes to diagnosing women. In fact, they used to think it’s a men’s disease. One woman was even told this year that she can’t have AS BECAUSE she’s a woman!

What is AS? My understanding is that it’s an autoimmune, inflammatory arthritis that is progressive, incurable and leads to the infamous hunchbacks you see due to the finding of the spine. Some people fuse straight as a ramrod. Once your bones are fused, you’re stuck in that position for life. So you can have people who are stuck looking down for life. It has many comorbidities and can shorten your life depending on which organ it attaches and how it attacks it. It’s scary. In White patients, the HLA-B27 gene is expected, but Black patients usually don’t test positive for this gene. I didn’t. It tends to run in families. It might be in mine.

Why “my understanding?“ Because my rheumatologist didn’t tell me anything about it!

So, as a teenager, I was diagnosed with Juvenile Rheumatoid Arthritis. I was never sent to a rheumatologist. And all the GP did was to give me Voltaren gel to put on my aching, swollen joints. For many years thereafter, I knew that winter came with terrible pain and inability to use my hands. I I wouldn’t be able to hood a mug, couldn’t bend my fingers to iron and the pain was horrendous. Winter was bad.

I was active. Jogging, exercising for an hour each day, walking to campus, walking a LOT and far, for exercise. By my early twenties, what I now see as signs of AS started up. I had a warehouse job and walking caused a lot of pain in my feet and lower back. None of the other employees complained as bitterly. I changed job but even in the next job, my back was painful. I thought maybe the nursing home residents were too heavy for me. So I found yet another job.

In 2011, I was sitting on a stationary bike when the most awful pain hit my sacrum. That’s when I started seeking help. But none was to be found. An MRI in 2015 didn’t show much. An X-ray said I had disc height loss in my lower spine but they said that wouldn’t cause the amount of pain I’m in. Nobody sent me to a rheumatologist. I was told to see a biokineticist, a physiotherapist.. None of them helped. They said it was due to low core muscle tone but I knew it wasn’t that.

A chiropractor said it was because I carried my child on my hip. (Soho come others weren’t in such pain??) I’d stand for a while and then have to run to my room to cry from the pain. Along the way, a doctor guessed that I had SI joint pain as my hip also became excruciatingly painful.

I gave up.

But the pain didn’t. It got worse over time. My joints stopped swelling as much but my lower back started to scream. By last year December, I couldn’t take it any longer. Is reached the stage where I was being God to kill me every night. Sometimes I’d try walk and my leg would buckle. I started limping and having to shorten the evening walks with my husband. High impact exercise caused a lot of pain at first, and then all exercise once I stopped high impact, would mean the rest of the day would see an increase in pain earlier in the day.

I couldn’t cook without having to take a break to lie down. I couldn’t clean. I was in agony.

I went to a pain clinic where a GP sent me for a bone scan. I have arthritis and degeneration in my pelvis, shoulders, neck, elbow, knees, right foot. Oh yes, from my early 20’s I used to beg my husband to rub my heel. The GP said I needed facet block try injections and radio frequency ablation to get rid of the pain in my joints. But this didn’t address the enthesitis the scan also found. (Inflation where ligament or tendon meets the bone.) That, plus other reasons saw me canceling the attempts at pain relief

I saw a GP who agreed with me that I needed to see a rheumatologist. But the one with great reviews, a Dr Brijlal even this year can’t tell me when she will be available. Another was only available this month, and I was desperate in December! So I took an appointment with one who was available in January. (Seems to me that the ones who have space early aren’t great. Just my own opinion and based on reviews.)

He sent me for an MRI of my sacrum after marveling that I was about to smile given the results of my bone scan. In his words, I was “full of arthritis.”

The scan showed Ankylosing spondylitis, especially in my right side. The one that frequently became so painful and locked that I couldn’t step on my right leg without lurching about and making my husband offer to carry me.

He gave me a prescription. I asked what the needs on it were. He said, “It’s painkillers. Don’t worry, I know you have chronic gastritis so it’s not anti inflammatories.” That’s all he said. No instructions, no telling me what each medication was. The pharmacist was appalled!

He’s sent me for Omeprazole (a PPI) to protect my chronically inflamed lining from the Prednisone he’d put me on. And sulfasalazine. One of the meds you start with when treating AS (and a few other arthritis, according to the insert.) This doctor didn’t tell me how many months I’d take the medication, didn’t tell me why, didn’t tell me anything. He also injected me with steroid and anti inflammatory.

That, plus my discomfort at having to disrobe and be so closely inspected have made me seek for a female rheumatologist. Another great one set up an appointment for me for NEXT YEAR MAY!! 😭Too far. So I’ve found another who will see me in the meantime in May, which is when my next appointment with the rheumatologist was to be.

I’m nervous. Some doctors have shown a very racist bent and she’s old. (As are most of them. Not next year’s one though!) But very few of us Black people have AS and the one in my SA group who does is in a different province, so I couldn’t ask her for a suggestion. This lady was recommended by one other patient. White patient.

The pain has increased dramatically. (I suppose the effects of the infection have worn off. I saw the rheumatologist early in February) It’s as if I’m not on any treatment BUT I still am not waking up begging to die in the night, so I guess the Sulfasalazine is going something-four tablets a day. The prednisone is more dangerous so I only took it for a short time. It’s for when flares are super bad.

And that is MY delay to diagnosis. I sought help in 2011 and only got a diagnosis in 2023. Many are on chemo meds. But those are expensive and most health insurance companies don’t pay for the needs unless you’re paying a lot each month. A lot lot. We’re paying a lot but not the highest amount so I’m not sure what to hope for. They can work much better but if I can’t afford it, what’s the point in hoping doctors move me onto them?

In the meantime, I wake up in the night in pain. And I spend the day in pain. Diagnosis hasn’t helped much. But it’s a start.

As for my children? My teen daughter started with the “sausage digits” maybe two years ago. Even just barely touching things would cause intense pain for her. It hasn’t progressed to other joints like it did with me. And my son has a hunched over back at his upper spine. He too gets swollen fingers in winter like his sister and I. Yesterday morning was cool and he woke with stiffness.

Our finances aren’t great but I do plan to ask the rheumatologist if they should see her. Just getting MRIs for them would take away all the medical finances we have for the year and I don’t know what bloods and scans she will send me for. Nor do I know that we’d do anything yet regarding treatment. In the meantime, we will do what the Romans do when they start to swell-NSAIDS. (Which is what the GO suggested for my daughter anyway. That plus keeping warm when winter comes.) Thankfully, they don’t have stomach problems so the anti inflammatories should be safe for them if they eat first.

I really hope they don’t have it.🙏🏾