I have a family member that has been in and out of hospital for about 3 years now. A couple of years ago she went to hospital thinking she has mumps since one of the children had it. Then something went horribly wrong and she ended up in ICU in a coma with her organs failing and her body swelling, she almost died. From there NO DOCTOR has been able to diagnose what happened or confirm if she had mumps in the first place, at one point they speculated that she might have caught a bug in the hospital but could not confirm it, they have no idea what it was/is to this day. Since then she has had numerous health problems and various symptoms: high blood pressure (260/156), kidney failure, heart failure, low potassium levels and fits and still no doctor knows what is the cause or how to treat it. Blood pressure medication does not bring down the blood pressure, the doctors say that the high blood pressure is the cause of the kidney failure and the other symptoms. Apparently all possible tests have been done and they can't seem to find the solution. She has been for brain scans etc. Is there a medical association that takes on cases like these to do research to try and find the diagnosis? Your input would truly be appreciated, also if you know of any hospitals or facilities that takes these cases please let me know.
Such a high BP that's not responsive to antihypertensive drugs means probably pheochromocytoma or hyperaldosteronism ( which is more likely with the low K level ) Just an idea .. Maybe they checked it already .. thought its better to make sure !
From your description, I can only guess an etiology (but of course we need more informations, which kind of exams she did and their results, etc.) What about her pharmacological therapy? Has she other pathologies? So, in my opinion, if doctors confirmed that she really had had mumps: 1. undiagnosed severe acute pancreatitis (due to pancreatic localization of epidemic parotitis virus) --> 2. Multi-organ failure due to pancreatitis --> 3. so first kidney damage (probably she underwent an acute kidney failure) --> 4. Hypertension (probably, after the acute kidney failure, she had permanent damage on her kidneys, so that the reduction of kidney filtration stimulates activation of renin-angiotensin-aldosterone system with hypertension due to secondary hyperaldosteronism ) ---> 5. Chronic kidney failure ( severe hypertension damages the glomerular membrane, it's a loop) ---> 6. heart failure (due to hypertension; in fact a chronic increasing of the afterload leads to an ineffective cardiac work, increasing of O2 consumption (and sometimes, acute myocardial infarctions), ventricular remodeling with progressive ventricular dysfunction and then heart failure. To confirm it we need: serum creatinine, creatinine clearance, proteinuria/24h, aldosterone and renin level, serum IgG for epidemic parotitis, pancreatic function (fecal elastasis, fecal chimotrypsin, fecal lipids). Echocardiogram to discover her ejection fraction and monitor possible functional pathologies of cardiac valves. Chest X-ray in case of dyspnea (pulmonary oedema risk). all of it, of course, only if initial diagnosis of mumps has been confirmed with serum positivity for epidemic parotitis virus IgG (in absence of previous vaccination against it or previous epidemic parotitis in her life).
Cushing or Conn's syndrome that would explain hypocalemia, high blood pressure and everything, heart failure due to low K levels also need to check how much is the urine...
All above mentioned scenarios are possible , yet I wonder if a patient with acute pancreatitis can present with sudden loss of consciousness ?? Could it be encephalitis caused by mumps virus?what is her CT scan result? And CSF analysis?
well, in case of multi-organ failure due to severe acute pancreatitis, there could be both metabolic acidosis and shock as possible causes of loss of consciousness and coma (unfortunately they aren't so rare, particularly if acute pancreatitis is misdiagnosed or untreated). also the encephalitis is possible, but this hypothesis could justify only the loss of consciousness and not the organ failure. there is body swelling, so the patient had one or all of the following problems: acute congestive heart failure and/or kidney failure and/or liver failure with hypoalbuminemia and decreased protein synthesis (however the last is rare, because it's necessary a necrosis of 70% of the liver mass in order to have liver failure). This is the reason why I guess "acute pancreatitis". The second reason is that, for adults, mumps are clinically more relevant than for children, with frequent severe involving of pancreas and testis.
Thanks to everyone's input. They have ruled out pancreatitis. The low levels of potassium is a recent symptom, she now gets daily doses of potassium and her levels are also checked daily, they have no idea where the potassium is going or what the reason for the loss is. I have read about resistant hypertension, which I assume she must have, since she is on 4 different hypertension medication. I seems that they are struggling to see what is causing what, I the hypertension causing the kidney failure and heart failure or is the kidneys causing the hypertension. There was a kidney biopsy done and apart from it failing there was no indication of kidney disease. Would that then mean the hypertension is causing the kidney failure? She received a procedure where they burnt some of her nerves to help her kidneys and delay the inevitable... dialysis. If the underlying problem was the kidneys, will dialysis or a kidney transplant not sort everything out, like the hypertension and heart failure? Again, thanks for all the input.
dialysis /transplant could solve the problem of kidney failure, but not the problem of heart failure if ventricular remodeling has already taken place. but which drugs does she take now for hypertension? and which drugs did she take before? That's important! hypokalemia of course could be the consequence of some diuretics (es. furosemide, thiazides) used for hypertension, or caused by drugs sometimes used for heart failure (es. digitalis). however, other causes of hypokalemia and resistant hypertension could be hyperaldosteronism or pheochromocytoma (I don't think she has really a pheochromocytoma, because in this case there's an "episodic hypertension"). Search for aldosterone/renin ratio! If there's a problem of hyperaldosteronism, dialysis/transplant sometimes can't solve hypertension, 'cause the problem is not in the kidney itself. It could be a rare renin-producing tumor, or an adrenal adenoma: in these cases hypertension should be solved with nephrectomy in the first case (and look for that, because sometimes the new kidney is transplanted in pelvis/low abdomen without the nephrectomy of patient's kidneys!) and with monolateral adrenalectomy in the second one. Look for a stenosis of renal artery too (atherosclerosis or Fibromuscular dysplasia). And, last but not least, try to search these neoplastic forms with a simple MRI, avoiding CT or angiography (if they' are not necessary, of course)...her kidneys won't appreciate the contrast medium (she risks an acute on chronic renal failure!). I hope you'll find all this useful. Let us know.
you must have to do a urine test because due to the high blood pressure.its effect on your heart so heart failure is only due to the low k levels.so must also check a test of a c reactive.i think these test are helpful for you.
Good day guys, again your assistance is appreciated. It is very difficult to get the answers from all the doctors and specialists that has been working on the case for the past few years and what tests was done exactly. So I apologize for the limited information. What I do know is that she has done hundreds of blood tests, urine tests, biopsies, MRI scans and even a test to see if there is a tumor on her brain stem, all negative. That is why I am hoping for someone to spot or think of some diagnosis that doctors might miss that could give us an answer. I am very dissapointed that the doctors here don't have an international platform where they can load up her case file with all the tests and test results for specialists, researchers and doctors to assist in finding the diagnosis to save her life, after she dies of this mysterious condition then I assume they will want to do research ect, why not do it while she is alive. I anyone knows of an international platform or research center where we can ask the current doctors and specialists to upload her case for study, please let me know. Thanks
I have read up on a couple of the ideas that you posted on this thread and came came across allot of interesting stuff. Is it possible that the medication (she is on allot of medication) given to fight the hypertension is causing an effect that the body is not absorbing potassium? I have read that there is quite a chain reaction that involves, overproduction of aldosterone(secondary hyperaldosteronism) which results in hypertension, low levels of potassium etc, but since the low levels of potassium has now become even more of a concern, because they struggle to get the level above 2, that a medication like Diuretics are causing the hypokalemia? Would a potassium-sparing -diuretic counter that effect? Would hyperaldosteronism be the diagnosis then? Would it be a common diagnosis and easily detectable? They cannot find where the potassium is going to, not in the urine, is it building up somewhere like a ticking time bomb?
Yes i agree this. One of the reasons for chronic fatigue, allergies and sensitive digestive system is due to all the good gut flora being knocked out which will in turn really upset the immune system. If the doctors do their job properly or do their homework they should know this - if not - they need reminding. Don't be turned away with more antibiotics - and get them to consider fungal overgrowth as a result of all the antibiotics you have taken already.
