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Diagnosis...Finally. The Good News Ends There.

The brain biopsy results came back today.  It turns out my Mom has protein deposits in her brain, also known as neuroamyloid.  Don’t worry about Googling it because there isn’t any information about it out in the wild (though there is plenty of information about amyloid itself as it can happen in virtually any organ)…actually she is the only the 3rd documented case in history to her doctor’s knowledge.  We knew it would be something strange, but perhaps not quite this strange.  They have absolutely no idea how/why it happened, and more importantly why it happened this late in her life (the other 2 cases were much younger).  One definitive answer, so many more questions.

The other part of the diagnosis is much more grim.  It’s lethal.  Again, they have no idea how lethal…she’s old enough that she very well could outlive the disease, but the docs have absolutely no idea as to a timeframe, and nor will they in the future.  It’s also progressive, and there is no known treatment.  There aren’t any specifics as of yet about the other 2 cases, but I’m assuming there will be as the docs do some more research.  And to top it all off, there’s a very good chance that it’s hereditary (which seems a little odd as there are so few cases of it).

So that’s it…we have a diagnosis, and that’s about it.

Sidenote:  If you were diagnosed with a terminal illness, would you really want to know the timeframe?  Both sides can be argued.  I honestly can’t say what I’d do.  Anyways, happy thoughts folks :-).


Posted Nov 05 2005, 07:09 PM by Jayson Knight
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4 Comments

Sara wrote re: Diagnosis...Finally. The Good News Ends There.
on 11-06-2005 4:46 AM
Wow, that's really heavy. You and your mom will be in my thoughts. re: terminal illness. I would prefer to know if its going to be 1 year or 20 years, but not the exact day. I think at least; hard to say until it really happens to you. Best thing you can do is just enjoy each other as i'm sure you always have and live with no regrets.
Dave Burke wrote re: Diagnosis...Finally. The Good News Ends There.
on 11-06-2005 6:51 AM
So very sorry, J-man. God bless you, my friend.
Keyvan Nayyeri wrote re: Diagnosis...Finally. The Good News Ends There.
on 11-10-2005 6:06 PM
I'm sorry. But be patient. A few cases is in hostory is not a reason to say that "They can't" Every question is answered one time. So be sure that human can solve any problem. Just pray more and we'll do it. God is kind and will help ;)
Brendan wrote re: Diagnosis...Finally. The Good News Ends There.
on 11-14-2005 4:46 PM
I'm really sorry to hear this. I was praying for a much more optimistic response. The thing is that they don't really know much about this at all, so I think it's best to live life to the max and try hard not to let this take over. My thoughts are with you both.

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