May 19, 2014 § 3 Comments
Sorry for the delay in posts, my symptoms have been quite bad lately. Over the past couple of months, my new rheumatologist has revealed that I don’t have Rheumatoid Arthritis, but she’s not sure what I do have. After the shock of realising I’ve been mis-diagnosed, and therefore on the wrong treatment, for over two years, I’ve come to understand that I don’t necessarily need a label. All I need is to advocate for my own health and with an understanding doctor, we can find the correct medication to give me some relief.
“Well, my pain is still really high, my joints keep swelling up, I’m finding it hard to keep up with studying and my back pain and reduced mobility is just getting worse and worse. Plus the vomiting from the methotrexate is getting bad” I poured out to my rheumatologist, Dr B. This was met with the usual “hmm, okay, increase the prednisolone and come back in four weeks” Handing me a piece of paper scrawled with a dosage and instructions for the receptionist to book the next appointment, I was ushered out of the room. I had been waiting weeks for the appointment and hours in the waiting room, to be met with a doctor who saw me as a Rheumatoid Arthritis patient, not a person. He wasn’t listening to me. My symptoms were not under control and I was experiencing new ones which don’t fit an RA diagnosis.
I was 20 years old and still relatively new to the scary world of hospitals, tests and of course these strange symptoms my body was having. I was training to be an Osteopath at the time, so whenever I experienced a new symptom my brain would jump into action thinking of all the possibilities it could be. I put up with this rheumatologist for over a year because I thought I had to. I had a similarly uncaring GP who would brush off any symptoms and when I said how I was training to be an Osteopath, he said sarcastically “huh, good luck with that” and stood to open the door for me to leave! That was the last appointment I had with him. I made it very clear to the receptionist if I was requesting an appointment that I would not see him.
After graduating, I moved back home to live with my parents and decided to move rheumatologists too. I went to my first appointment prepared with a write-up of my medical history, symptoms, treatment tried so far and a list of priorities. Near the top of the list was reducing the nausea and vomiting from the methotrexate and to diagnose and treat my back pain. I met Dr R and she sat and talked to me for over half an hour. She read through my entire write-up and summed up that the management of my condition so far was not good enough. She immediately decided to change the methotrexate to injections to reduce the side effects and gave me a telephone number to contact the rheumatology nurse to update her on the progress. I was even scheduled to have an appointment to teach me about the medication and how to take it, rather than relying on doing my own research like I had to with the previous doctor.
I eventually moved onto a new medication because I was still getting bad side effects from the methotrexate, no matter how I took it. Then Dr R explained that she didn’t think I had RA. This opened up a whole range of possible diagnoses and treatments. Luckily with my Osteopathic knowledge I knew of a particular blood test to check for spinal inflammatory diseases, my GP ordered it and after the relief of a false negative, my GP called me in again to tell me that it had been ‘reviewed’ and was actually positive. So with a positive blood test, an MRI showing no inflammation and loads of random symptoms, Dr R is now reviewing everything with the head rheumatology consultant to get the most accurate diagnosis.
The problem with rheumatic conditions is that there can be a lot of overlap of symptoms between conditions and you can have more than one! Although I am now in a situation of diagnosis-limbo, I am happier knowing that we are searching for a more accurate diagnosis. Dr B would have blindly continued along the RA path, getting frustrated at me for not improving on the RA medications, never stopping to wonder why. It’s so important to have a doctor you can trust. In the UK, although we don’t have to pay to see the doctor, we have to remember that they are actually working for us. They are there to help us. If they are not helping, we have to tell them. They don’t read minds and, unfortunately, there is no ‘pain-ometer’ they can plug us into to see how much pain we’re in! We have to do our own research, speak to the doctors honestly about the symptoms and side effects we’re experiencing and most importantly, trust our instincts. We know our bodies better than anyone else does. My blood inflammatory markers are almost always within normal range, no matter how good or bad I feel. Doctors who rely on blood test results may never actually know what their patients are going through or how well the disease is being controlled. With our doctors, we have to look at all our symptoms, blood test and scan results and take it all into account to reach the most accurate diagnosis we can. After all, a diagnosis is just a label stamped on us to get us onto the path of trial and error with numerous medications.
As Dr R said at my last appointment, “diagnosing you is difficult, because you fit every criteria for everything!” But you know what? For me, a diagnosis is not a priority, finding the right medication is. So whether I have spondylitis, psoriatic arthritis, rheumatoid arthritis, AS, or a combination, I will still be pushing to try the next medication each time one fails. Until then, I’ll just label myself with ‘autoimmune arthritis’ and that will have to do
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Thanks for reading! Keep well,