Mystery disease, progressively getting worse

Hi everyone,

My dad has been on dialysis for the last 11 years. He has been getting progressively worse, but in the last few months things have really taken a turn. He was diagnosed with a TIA about 2 months ago. At a different hospital, one that specializes in neuroscience, they sat his cat scan shows a lot of brain damage and that he had a severe stroke. Since the TIA (since that’s the official diagnosis,) he has experienced short-term memory loss. He has been getting progressively weaker, needs help moving around, and needs help eating (some days he eats on his own, some days he is too weak.) He can still talk normally and his long-term memory is fine. Yesterday he was at dialysis and something happened, we’re not sure what. He was found passed out with vomit all over him. At the hospital they did a cat scan and did not see any new brain damage. He cannot speak (when he tries it’s gibberish) and is generally unresponsive. He looks around at people, but if you tell him to raise his hand or open his mouth he doesn’t do anything. He’s had a slight fever since yesterday, but there has been no sign of an infection yet. Today he still not able to speak and is generally unresponsive. He is sleeping a lot and will open his eyes for a little, look around, and then closes them again. An MRI has not been done yet. They did an EEG yesterday (1 hour) and did not find anything.

We are at a loss. Has anyone experienced this or have any recommendations on what tests to look into or what this could potentially be?

Edited: he is 65 and has diabetes, esrd, does hemodialysis 3 times a week, and has high bp.

To be honest, this doesn’t sound like a mystery disease to me, but it is nonetheless very disturbing for you to process and understand.

This does not sound like a dialysis problem, at least not in the first instance, but sounds more like that he has - sadly - widespread small blood vessel disease in his brain and that he is having (or has had) a number of mini-strokes - often referred to as TIA’s (Transient = come on, then resolve or improve … Ischaemic = reduction in blood supply … Attacks = episodes of) … ie: recurrent episodes where the blood flow to his brain tissue is either being reduced, or interrupted.

Diabetes +/- high blood pressure damage small blood vessels … but ALL OVER the body. This occurs to, among others areas: the kidneys (kidney failure); the heart (poor heart function and/or multiple small or large 'heart attacks" = infarction; the eyes (poor vision); the nerves (especially but not restricted to the small nerves of the extremities - especially the legs and feet - with numbness and changes in sensation; and the brain (with multiple small stokes in patch areas throughout the brain that lead to functional [speech, movement, etc] or to memory loss).

The brain changes that result from this extensive (and sadly, in 2017, irreversible, small vessel disease) are often referred to as multi-infact dementia … or a loss of brain function as a result of many small areas of the brain losing their blood supply. Some recovery can occur - especially early on - but as injury piles up on injury, the cumulative effect is a dulling or a loss of key brain functions … speech and memory being two of the more visible to relatives and family.

Dialysis - especially if is too aggressive with fluid removal - can de-stablise the blood pressure which, in turn, reduces blood flow to the brain and can precipitate (bring on) new ‘attacks’.

Is there a remedy? I wish I could say there was … but from your description, from very far away, and without knowing all the details of your dad’s long illness, this sounds very much what the problem is likely to be.

You need to sit down with his treating doctor(s) and ask them to explain, in very simple terms, the likely cause - though I fear I may be right - and to let you know if they think there is any remedy. But, again, I suspect there is not.

It is very sad for you - and very confronting for the family, considering all he has likely gone through, but this is - I fear - the truth.