Christine just called me from Chile. She is unable to urinate, and has been since last night. They have catheterized her and drained her bladder of about a litre of urine. She did feel the pressure of the full bladder, but wasn't able to do anything about it.
She is also constipated, and her period is getting toward the late side of things--today is the final day for her normal window for when it starts.
A doctor down there tested her reflexes, and said that he thought that they seemed weak for her lower body. They are ordering at CAT scan, but won't tell her anything about what they're thinking.
Given that it's a CAT scan, they must be thinking something neuromuscular, right? What kinds of things could this be?
posted
Sweetheart, neuromuscular is the big concern, although it is likely to turn out to be nothing.
If it is neuromuscular, it could be anything from a case of (scary but resolvable) reaction to a virus, or it could be more. Do you want to discuss this here or on email? Or on phone?
I want to give you the information you seek and at the level you want it, but given this is a potentially scarey thing, I want to make sure you are okay.
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She says that they've ordered pretty much every blood test under the sun as well, so it's possible that they just aren't sure what the problem is, and are checking out all the possibilities.
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The bad stuff first: I would be wanting to rule out things like Guillian-Barre syndrome, a spinal cord tumor and multiple sclerosis. Those would head my list of Scarey Stuff to Rule Out ASAP.
All of these can be dealt with. The first step would be a CT or MRI of her spinal cord (and likely brain), so that is being done. This will tell them whether there is some mass effect (a general push to one side or the other) on the spinal cord. If there is, remember that many spinal cord tumors are benign (like lipomas) and can be removed without longterm effects.
We think Guillain-Barre is a likely reaction to a prior infection -- it is an autoimmune sort of thing that is triggered by response to a respiratory or viral illness. It shows up as ascending muscle weakness -- i.e., it starts at the feet and moves up the body -- and it has a variable course. In some people, it moves as high as the diaphragm or higher, and they need to be on a ventilator until the weakness goes away again. The weakness does go away -- you just have to keep them going until it does.
Multiple sclerosis is the demyelination (removal of the sheath of protein) of nerves. It waxes and wanes in some people, but in others there is a slow, steady progression. Regardless, many people live full and happy lives with MS. The trick is to catch it and to treat it. Because it often has a waxing and waning course, it is often hard to catch, since the symptoms may go away completely for long periods of time.
I think MS is less likely given the symmetric bilateral findings. Demyelination is usually pretty random, and it would be odd to have it affect both right and left sets of nerves to the legs in the same way at the same time. That is why they are likely worried about ruling out a tumor by CT right now -- a tumor would press on the cord at one point, affecting all the spinal nerves that come out of the cord lower down equally. Constipation and urinary retention can result.
This is also why some of the other possibilities, like Lyme disease or polio, are pretty unlikely. Still, they are doing a lot of labwork likely to get a full picture of what is a possible explanation and what is not. If they don't find an answer, I expect they will look for things like botulism, too, although the picture doesn't quite fit just right.
Something like myasthenia gravis is also a possibility, but again it doesn't quite fit. However, it is very treatable and very liveable with.
The good stuff (read this too!): the urinary retention itself is possibly secondary to an herb or other chemical that she has been exposed to. Or it could be something else equally minor. What is concerning is the association with more widepread weakness in her legs.
Listen: Whether or not she is actually weak in her legs or has altered reflexes on clinical exam is a highly subjective assessment. When we are worried about finding something, not only do we err on the side of caution, but we are more likely to overinterpret or even think something is there when it isn't. Not to be dismissive of it, but this is standard testing bias.
So they are doing exactly the right things to take care of her, and there is nothing that is remotely likely to change anytime in the next few days. And the biggest likelihood of all is that something wonked with her bladder (like belladonna or Chinese herbs with anisodamine, or who knows what, even an idiosyncratic viral reaction) and there was some testing bias that came into play in the rest of the physical exam. The constipation and delayed period also could be coincidental and show up as troubling only because we are looking for them.
Good luck. Keep us posted. I will email you my cell phone number in case there is something I can be more immediately helpful with.
[ November 10, 2004, 01:58 PM: Message edited by: Sara Sasse ]
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*big hugs for you both* Please do keep us posted. And call Sara if you get worried. She's so, so good at helping. Honest.
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Sara, just fyi, my stepfather had Guillain-Barre, and was transferred to UAB. There they did plasmapheresis, and it was an instant cure. He had three different sessions, and got significantly better after each one.
Actually, cure is too strong a word, I guess, given that even now, five years later, he has numbness in the extremities. But, the plasmapheresis did wonders, he went from being on the verge of needing a ventilator to walking in one day.
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Yeah -- it sounds so scary when you read about it, but it is sooo fixable. And for those for whom the treatments like plasmapheresis don't work, there is always tincture of time.
(Vana )
[ November 10, 2004, 02:14 PM: Message edited by: Sara Sasse ]
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I just got off the phone with Christine, and apparently it was a raging bladder infection that, strangely enough, didn't have any of the typical symptoms of a bladder infection! She's on antibiotics and muscle relaxants.
I'm not sure how a bacterial infection could be causing this, but I'm okay with that, as long as she's okay. I think that's the most worried I've been about something, as an adult.
Anyway, the CAT scan showed a perfectly healthy body (neurologically, that is), and she got to keep the pictures (or are they big slides, or what? I asked her, but she was getting a bit loopy from the muscle relaxants, I think), so that's cool--I can't wait to look at them.
And I bet they conclude that the finding of weakness in her legs wasn't a true finding after all -- they were worried and looking for it, and they erred on the side of caution and/or overinterpreted a finding.
posted
I'll bet so too Sara. In fact, Christine was saying that she was suspicious of that from the start; she thinks that her lower body reflexes have always been a little slow, and suspected that they were assuming a baseline that wasn't right for her.
I sent you an email, by the way. Basically says what was in my update in this thread, but in slightly more detail (not much more, because I know frustratingly little about this at this point).
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You know, it's funny--when I'm in situations where *I'm* in danger, or am hurt, I deal with it by getting almost ridiculously, coldly calm, and just doing whatever needs to be done with an efficiency that I usually don't possess. This time, with it being Christine who was in trouble, I just kind of shut down. I was fighting an overwhelming desire to sleep from the instant she phoned me and told me about the problem until the moment called and told me the good news. I've never really reacted to something like that before. I think that was the most scared I've been as an adult. Did I already say that?
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This is one of those times I'm glad I check Hatrack much less than I used to-because now I read this thread with the Good News Update edit, and the actual good news!
Very glad to hear it, Jake *high-fives* all around.
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Glad to hear it all worked out. jenni and I had that happen in a smaller way on halloween, and it isn't fun when your loved one is hurting and no one knows why or what to do to make it stop.
I ended up OK, but for a while it looked like a gall bladder problem and the doc's had the OR on standby just in case, so Jenni was terrifid.
I am glad that it all seems to be working out for you.
Sarmup, she's in a Spanish immersion program down there. Her Spanish is getting incredibly good too. Painful as being apart for an extended period of time is, I think that it's a good thing that she's doing this.
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Yay for Christine and Noemon! And way to go Sara for nailing that diagnosis! You rock so much! I want you for my doctor! Posts: 6246 | Registered: Aug 2004
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You know, I used to date a girl with myasthenia gravis. Imagine my surprise at seeing it mentioned here!
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She got the blood tests back a little while ago, and everything looks fine. I think that between the blood tests, the MRI, and the sonographic stuff they did that we can be fairly sure there isn't something hidious at work. I was feeling much relieved already, but it's nice to be dotting all the "i"s and crossing all the "t"s in terms of making sure that she's okay.
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