True or False?
Posted , 8 users are following.
Hello all! I have a question I hope someone can clarify for me.
In my recent reading of information about Sjögren's Syndrome there is something I have seen mentioned a few times which doesn't seem to ring true to me.
Many seem to say that it's not that important to get a definite diagnosis for S.S. as there is no treatment anyway, just as long as one is getting management for the individual symptoms, whether that be pain, or dry mouth or gut motility issues etc.
However if this is an autoimmune condition whereby the immune system is ramped up beyond normal, surely one of the goals would be to lower the immune response to prevent further damage to other tissues or organs......hence the use of immunosuppressive medications? The goal of immunosuppressive drugs being to inhibit the activity of the immune system.
Without a confirmed diagnosis, immunosuppressive drugs (or other effective treatments), are less likely to be felt to be warranted or indeed implemented by most doctors.
Treatment for individual symptoms is well and good and can make life tolerable but they alone do not prevent the progression of other extra glandular symptoms stimulated by an overactive immune system and it's concomitant autoantibodies. At the very least a confirmed diagnosis gives credence to the disease process thus mandating regular surveillance and monitoring for ongoing changes.
So my feelings are that it should be paramount to get an objective diagnosis, notwithstanding seronegative status (if that is the problem), by whatever means possible! It occurs to me there is a laissez-faire attitude to obtaining a diagnosis of this condition particularly on the part of medical practitioners and sometimes reflected in patients comments also.
Thoughts?
0 likes, 19 replies
meg64928 Megheart
Posted
Megheart meg64928
Posted
Case in point. Just three weeks ago when I went to see my current Rheumatologist for my first visit, I had in preparation obtained copies of all the pertinent tests I had had done over the nine years since becoming unwell. When I told her I had Gastroparesis, I said my stomach emptying was zero for solid food, she said "oh did you have an emptying study done" with a bit of a sceptical look in her eye?". So I handed over the report of the GES results and in black and white she could read the results. No question - she believed me.
It makes a huge difference. It is unequivocal.
aitarg35939 Megheart
Posted
lily65668 aitarg35939
Posted
I think the problem resides in a combination of the education of doctors and the public adulation of them - the latter in turn growing out of an understandable, though not always realised, fear of death. For as long as we've had doctors - so more or less from the beginning of human civilisation - we've been in thrall to them. Regardless of what we might say, even to ourselves, human beings are hardwired to desire immortality. Medical treatment has always been perceived as offering that - sometimes in the literal sense in more primitive times, but still at a subtler, unconscious level now.
Over the millennia, this unhealthy, compliant attitude has inevitably led to many doctors seeing themselves as infallible beings who must never be questioned. We all make mistakes and poor judgement calls, whatever we do for a living. It's part of the human condition. Most of us admit our mistakes, and try to learn from them. Too many doctors, convinced of their own infallibility by the joint conditioning of their training and the adulation of their patients, aren't able to do that. Hence these abrupt ex cathedra pronouncements that can never be revised. I'm not saying all doctors are like this, but at the most generous estimation, I'd say a very significant minority are.
I have to say I've seen the other side. I fell on my feet when I moved house three years ago and started seeing a different GP. Though authorative (not the same as authoritarian) and not afraid to tell me in no uncertain terms when he thinks I'm wrong, he's also a model of humility, open to different views and only ever issuing advice, not orders. This is how it should be.
We can't undo thousands of years of conditioning, but I do think we can all do our small part to bring about change by questioning our doctors and standing our ground when we don't feel happy about their advice. That goes for dentists too, by the way. Last week, my dentist - who seems to be a competent young man - was reduced to incoherent shouting when I politely questioned him as to the wisdom of a procedure he was proposing to carry out. Another one bites the dust...