Getting answers through traumatic medical event

Dutiful One

I began noticing cognitive and behavioral changes in my husband several years ago. After experiencing one frustration after another in my attempts to get help, I came to the conclusion that the changes were most likely due to underlying medical conditions he has been diagnosed with (type 2 diabetes, atherosclerosis, and other issues). Seeing other family members with the same pattern of decline has also given me insight into what to expect. I knew that eventually, the decline would proceed to the point of being unmistakable, or that a medical event would occur that would bring on answers.

Well, the medical trauma took place three weeks ago. My husband has a history of diverticulitis. When he began having abdominal pain, he suspected a recurrence and asked me to take him to urgent care. They ordered a CT with contrast. Although he's had CT with contrast before, this time he had a serious reaction to it, and went into immediate anaphylactic shock. He was immediately given a benadryl injection and rushed by ambulance to the hospital (the CT scan was done at our clinic), where he was given iv epinephrine, steroids, and antibiotics (the CT scan had been in progress when he went into anaphylaxis, and enough was done to confirm diverticulitis). After a few hours in the ER to get him stable, he was able to go home.

After a few days, he was still very "out of it" and unable to talk without slurring his words. He had what he described as "brain fog". He'd say a few words and think he'd said a full sentence. His balance was off, he was confused, had constant headaches, became paranoid, was unable to do even the simplest tasks, and slept a lot. We made a follow up appointment with a PCP, who referred him to neurology for an urgent appointment. At both appointments he was evaluated for signs of stroke; he struggled at the PCP appointment, but by the time we saw the neurologist he was feeling a little better and able to perform the tasks with no problem. An MRI of his brain was ordered, and no stroke, bleeding, tumor, etc was found, so of course it was deemed "normal". The only finding was age-related white matter changes, which bothers me, as he's not even 60 yet, but the neurologist didn't mention this as a concern. He said everything was "normal". His balance has improved, he's feeling better, and the confusion has lessened. The headaches were found to be rebound headaches, a result of his overuse of tylenol to control them. Of course, I've heard this before; my mom had "normal" MRI despite being severely compromised, and the diagnoses of Alzheimer's was still given.

The end result: my husband now has "Mild Cognitive Impairment" on his medical record, because even though he "passed" the stroke evaluation and the MRI ruled out any injury, he's still presenting word-finding problems. He is also now aware of his decline, and says that he "doesn't feel the same as before". He's now saying that if he doesn't feel better, he'll pursue more medical intervention.

Of course, this isn't my first rodeo, so we shall see.

SDianeL

My husband's PCP referred him to a Neuro Psychologist for testing. It's almost 4 hours. Then to a Neurologist who diagnosed white matter disease probably vascular dementia. They later changed it to Alzheimer's - Posterior Cortical Atrophy after I kept sending them a list of his behaviors. They looked at the scans again. Keep asking questions.

Dutiful One

Thank you for the encouragement. I'm definitely not giving up! It has been discouraging knowing something is going on but not getting any help or answers. I feel like these are baby steps, but they are still steps.

The past few weeks have felt like a whirlwind. My boss was on vacation and I was taking her place. My work schedule was already altered and I added several trips to other towns for his appointments. I was also trying to care for my husband while keeping up on home and yard tasks. A lot of things got let go. In the midst of that, it was our wedding anniversary, which he forgot. I also had a birthday, which was spent in a hospital waiting room.

On Saturday I had myself a nice little pity party but didn't allow myself to wallow in it. One foot continues to be placed in front of the other.