3 ms·
Hey, I've read a few of your replies on this thread and wanted to give a (not official advice) medical perspective. I can't imagine what you and your wife are g
by zaptenodytes 3y ago
Hey, I've read a few of your replies on this thread and wanted to give a (not official advice) medical perspective. I can't imagine what you and your wife are going through at the moment. As someone working in Australia, the US healthcare system sounds even worse than the stories.
Firstly, her sodium was initially pretty drastically low for just diarrhoea - almost to the point of seizures - unless she was permanently on the toilet and vomiting, and guzzling water (without electrolytes) - suggesting there may be some other underlying cause worth looking into, if she doesn't have major organ failure normally - heart, liver, kidneys.
Secondly, it was absolutely replaced too quickly - though osmotic demyelination syndrome is typically in chronic hyponatraemics whereas if your wife is normally healthy, her sodium should be in the normal range and an acute diarrhoeal illness, whilst a unlikely but possible cause of severe hyponatraemia, would generally be a more acute process. The pathophysiology is essentially that your brain adapts to low sodium and then when electrolytes are replaced rapidly, the brain shrinks rapidly which causes damage to the cells.
Thirdly, benzodiazepine withdrawal is absolutely not pleasant and could definitely contribute/worsen symptoms so that sounds like a terrible idea stopping without a taper.
Personally, I have never seen ODS/myelinolysis but a normal MRI is reassuring and it technically means the diagnosis is no longer possible - there are cases where early MRIs haven't demonstrated any changes but the evidence states that typically by 4 weeks if there is any damage, a scan should show it.
Obviously I don't know what other investigations have been done already, but I hope you and your wife reach a satisfactory resolution, even if it doesn't result in a definite diagnosis - unfortunately there are still many aspects of human health that we don't know about and definitely things exist that we cannot explain. For example, some aspects of the story that you've described make me think of fibromyalgia, which we don't have any good clinical diagnostic test for at this stage - it's just a clinical diagnosis. I'm not saying to give up, but sometimes chasing a definitive diagnosis often ends up proving futile and worsening the whole prognosis - just think about what you and your wife's goals are.
Also, on a sidenote, restless legs syndrome is a real condition (I'm not saying she has it but yes, it is real).
- spacedcowboy 3y agoThanks for the insight, it's much appreciated :) I guess I didn't get across what I was trying to say about the "diagnosis" - be it restless-leg syndrome (which I totally agree is a real thing, not trying to downplay it) or one of the many other things they've come up with. The point I was failing :) to make was that they haven't come up with a diagnosis at all really - they're just throwing out there anything that might correspond to one of her symptoms, without addressing something that might be a root cause. IMNSHO :) FWIW, she didn't have any significant diarrhoea - she had a mild instance of it. The thing is that we don't know if she had chronic or acute hyponatremia - she hadn't been for blood tests that would have picked it up in, well, forever, previously to going into hospital. It was news to us that she had it at all - we went in for an unrelated reason (which they told us was benign). From my limited understanding having read up on it, it's possible she did have a long-term hyponatremia issue going on, and her body was just coping with it until it was discovered. They have done lots of blood-tests (metabolic panels, liver-function, urinalysis, various disease-specific tests, etc,) Her blood-work and imaging all come back fine. Anyway, she has more CT and MRI scans over the next week or two, ordered by various specialists. Here's hoping they find something to explain it. I still come back to "9 weeks ago, she was without any of these symptoms. Rapidly fixing the hyponatremia has ruined her life". I don't believe too much in coincidence, so for her to suddenly come down with something else at the same time as a medical treatment that made her go completely non-responsive where she couldn't even say her name is stretching credulity too far for me, unless some extraordinary evidence is uncovered.