It’s still a waiting game over here.

Waiting to be admitted.
Waiting for another attack.
Waiting to get into the Mayo Clinic.
Waiting for answers.

At this point we’re up to 8 of these “attacks” that Chris has had since November 8th. Prior to this date, he was healthy has a horse. He has never had any physical limitations or neurological problems. He never even has headaches. We first met in 2002 and I can count on one hand the number of times he’s even been sick (like….3 times, maybe? In over a decade!)

So what are these “attacks?”

I shared one of them a few days ago (see here). But here’s what its like:
It always starts off as a tingly/numbness that begins in an outer extremity and moves throughout his body in the span of about 20 minutes. Sometimes it starts in a hand, other times a foot (sometimes a foot and hand simultaneously), and the location always varies so its not localized to one side or one specific region.
About 10 minutes into the attack he starts loosing balance and coordination. He has a difficult time walking, he can’t easily manipulate things with his hands. One time he tried to itch his eye and his hand was just flailing around.
About 20-30 minutes into the attack he begins to experience some facial paralysis or facial drooping. He cannot control half of his face and looks as though he is having a stroke (though he’s not – the MRIs show that). His mouth and tongue go numb and he can no longer speak. If he tries to drink water, it runs down his face or he coughs and chokes on it. Meanwhile, the numb/tingly feeling has spread throughout his entire body.
About 30 minutes into it, he starts developing cognitive impairments. This is a relatively new symptom that has just started occurring in the past few days. He can’t follow simple directions. An example – at one ER the nurse said, “Go to the double doors.” It was very clear what to do and where to go in the room (I was there), but I had to guide him because he was unsure of what she wanted him to do. Another example – he was stressed as we drove to yet another ER for an attack and was trying to express his exasperation, “I can’t work if I keep waking up having these attacks!” (because lately they’ve been occurring at night and waking him up). But what he said was, “I can’t work if I keep waking up MRIs! I can’t just keep waking up MRIs!!” I’ve also noticed that when doctors ask him questions or give him directions he almost always asks them to repeat themselves, saying, “excuse me?” or “what was that?” I’m pretty sure this is NOT because he didn’t hear…it’s because he needs the extra processing time to understand what they want of him.
Following the attacks, he generally has extremely severe migraines that can persist for hours. He also had general weakness and fatigue that are completely debilitating.

When these attacks happen, he is very anxious. Especially since the confusion has hit, he is clearly very concerned and scared. He knows something is not right. I’m not sure how they feel first-hand (only what he tells me, which I have described here), but he says its so intense there is no way he can just suffer through them – he HAS to go to the hospital.

Which has been an issue because, as I wrote here, the doctors want to see him as an outpatient now. They’ve run every test they can and have referred us to the Mayo Clinic. They basically want him to just stay home and continue having attacks here until we are able to go to Mayo. Obviously, this has been a problem.

So for now, we’re doing everything in our power to try to get into the Mayo Clinic ASAP! The doctor had said it would be “a week or so,” but gave us no exact date. Doctors from another hospital made it sound like a month was more of the norm. We’re trying to pull some strings from the inside to get us in faster, and I plan on talking with the neurologist tomorrow to plead that he contacts them to explain the status of our situation, as well.

Right now, this mystery illness is all-consuming. It’s increasing in frequency, duration, and severity. It makes keeping a routine schedule absolutely impossible. And its obviously extremely difficult without family around. I HATE asking people for help, but I’ve been calling friends, neighbors and even total strangers for help left & right (note: the “strangers” are strangers to me, but they’re friends of friends so not total random people). Chris’ Mom was here for most of last week but just left this morning. She offered to stay longer and/or come back if needed, but this waiting game is so difficult. We can’t ask family to just move in with us for an indefinite period of time until we go to the Mayo Clinic.

So we continue to wait. And we keep fighting the good fight. Trying to get Chris admitted (he and I both feel better when he’s in the hospital instead of at home), trying to find answers, and trying to desperately cling to some sense of normalcy for the girls’ sake.

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