On August 21st, I finally got to see my new rheumatologist – some four or so months after the referral was made. I haven’t had a rheumatologist since my first one retired in 2009 – I don’t count the appointment with the doctor who rejected my diagnosis immediately when he heard I was seronegative*. Well, it turns out I likely can’t count this doctor either. I don’t know what it is about this magical profession, but I have struck out on real help from 2 out of 3 rheumatologists.
*In a nutshell, someone is seronegative when they do not test positive in a blood test for the antibodies specific to a disease, but they show all the symptoms of the active disease. Here is a really nice intro to seronegativity from a rheumatoid arthritis patient.
I fill out the doctor’s introduction sheet, and notice he doesn’t ask for a fifth of the information my first rheumatologist asked for. Little wonder he had asked me to arrive fifteen minutes early instead of at least half an hour.
The first thing the new doctor says is, “Let’s not regard what your last doctor said.” As soon as I hear those words, I know the diagnosis I’ve lived with for 11 years is in question. Surely the practice should be to thoroughly interview the patient, interpret all the evidence, request new tests as needed, and make a decision based on that? If a diagnosis needs to be revised, then it should be done on careful consideration with the patient and not on a whim. Certainly not in the opening sentence of communication.
I know I have no specific marker of disease, but there is enough inflammatory evidence to confirm something is severely wrong with me, which is borne out by the symptoms I live with daily.
He asks if I have had a lip biopsy. I can see where this is going. I say no. I’d do it if there’s a possibility of getting “proof”, but apparently it’s not on the table. He then asks why the last doctor said I had Sjogren’s syndrome.
I say, “Based on the symptoms”. (Like the years of dry eyes, sinus infections, mouth ulcers, tooth decay and loss, throat infections, pneumonia/bronchitis, joint pain, cutaneous vasculitis and all those other things my good friend, Venus, has.)
He doesn’t ask what the symptoms are. I have to tell him about the zero mm Schirmer’s test. I have to tell him about the cutaneous vasculitis. He seems mildly interested then. “Let’s see if it’s affecting your kidneys. You do have blood and protein in your urine.” He says he’ll send me off with blood tests to see if I “have an autoimmune disease”.
I hear myself say distantly, “I’ve been sick for 23 years. I’m pretty sure I have an autoimmune disease.”
He comes back with, “That’s what the blood tests are for. And if they come back negative, that’s good news. Then, I’ll treat you for your fibromyalgia.” He seems keen to re-diagnose that, and takes a minute to press all the trigger points.
I see the window is closing. I ask the question I’ve been wanting to ask for over a year now. “Is there a possibility of trying a biologic drug?” I’ve read some good results about the use of rituximab for the treatment of Sjogren’s fatigue – one of the worst symptoms of my disease. I think I could manage better if the crushing fatigue was under control.
He looks at me with disdain. “You don’t treat fatigue with with a biologic, you treat an autoimmune disease with one.”
I feel like I’m in a foreign land, where I’m speaking a different language to the doctor. You begin to understand why many people set low expectations for a new doctor visit. I went in with neutral expectations. I came out with low ones.
The first appointment lasted 15 minutes.
I haven’t been for the blood tests yet. I’m pretty sure that most of them will be negative, except for the C-Reactive Protein (CRP), which will be about 20 mg/L. I don’t dare hold the strange hope that I will be anything but seronegative. That would be too cut-and-dried. I’m seronegative and out of luck.
Besides, I’ve got a history of not tolerating the treatments of choice for Sjogren’s, so maybe it’s a moot point if he believes I have it or not anyway.
I know many doctors don’t believe what they can’t see on a diagnostic test. Like the acute pain I’ve had in my abdomen for 2 and a half years. I take it now that the gallstones have grown big enough to be seen on an ultrasound. (Apparently when you are overweight, things are hard to see. I had one ultrasound interpretation full of comments that boiled down to “It’s difficult to see anything”.) And it’s really hard to make doctors believe that obesity was an early symptom of my disease (after 24 years of being a healthy weight). I’ll be seeing a general surgeon next week (only thanks to a locum doctor, not my GP). Do I dare hope the surgeon will agree to explore why I need to take morphine for pain sometimes? Do I dare hope that I won’t live in pain for the rest of my days?
I’ll get those tests done. However, I don’ t know though that I’ll travel over an hour to the next appointment, and exhaust myself for the day after, just to hear this rheumatologist say that I don’t have an autoimmune disease – and perhaps hand me an expensive prescription for a fibromyalgia drug of doubtful efficacy. My naturopath has already told me that Lyrica (something my GP prescribed) would do me way more harm than good, and seeing as she listens to me – the patient – I trust my naturopath a whole lot more. She got me off prescription antidepressants for the first time in over 15 years. She got my digestive system moving again with ox bile, when all the doctors would do was prescribe me mountains of expensive laxatives. Yes, I trust her.
Seeing a new doctor should provide one with new information. It shouldn’t subtract from your knowledge. I consider it a danger sign that the first thing a new doctor says is, “Let’s not regard what your last doctor said.” When that has been said, before any new tests have been done, before any symptoms have been discussed, you know that he doesn’t believe in seronegative Sjogren’s disease – no matter that your quality of life has been severely compromised for over 23 years. Perhaps ego is more important. At that moment, you know the new relationship doesn’t have much of a chance.
You’ll keep fighting the invisible illness – as you know that there are many other patients in the same boat as you. The Sjogren’s Syndrome Foundation says that 70% of patients have a positive ANA (I have had a mildly positive result, at 1:320, but apparently that’s not enough). 70% are positive for SS-A and 40% are positive for SS-BB antibodies. That means around 30% of them are seronegative (30% of 4 million Americans with Sjogren’s = 1.2 million seronegative Americans; 30% of 430,000 Canadians with Sjogren’s = 129,000 seronegative Canadians). I do have the elevated ESR and elevated immunoglobulins, but that’s not enough for seronegative discriminating rheumatologists, and I’m batting at 2 out of 3 so far.
So, although I have a new rheumatologist, I don’t really, and I know from the low rheumatologist density here that I can’t ask to see possibly the only other option where I live. They consider that “doctor shopping” and although I pay for my public health insurance, I know from past experience that I don’t have that right. That means I’m on my own, and I’ll just keep treating the disease symptomatically, with eye drops and nasal gels and mouth gels as needed. The dryness will get worse as I age, but then the doctors will start saying (as they have already) that it’s just old age. I’m 47.
For the first time in 23 years of sickness though, I believe my own experience – not that of a doctor who saw me for 15 minutes. I know my retired rheumy made a considered diagnosis over many appointments, many tests, and many years. Seronegative autoimmune disease is not a magical illness. It’s real.