New Mysteries All the Time

New Mysteries All the Time

The mysteries of MS always keep it interesting as I struggle to manage my husband’s medical care and assist him in maintaining an optimum quality of life with Primary Progressive MS (PPMS). Another challenge came my way last week that stumped even his medical team after a hospital admission ruled out all sorts of possible causes. The mystery centered around his taking Ocrevus and developing confusion.

Starting Ocrevus

Lynn started Ocrevus (the first FDA approved drug for treating PPMS) in March. Ocrevus works by eliminating the B-cells in the immune system that attack the body. Unfortunately, along with the good result of stopping the autoimmune attack on the body comes the not so good result of a weakened immune system placing the individual at higher risk of infection while taking the medication.

Ocrevus Weakens Immune System

Individuals receive the first dose of Ocrevus in two equal infusions administered two weeks apart. Lynn received the first infusion without any difficulty on March 12. He was tired afterward but okay until a few days later when I noticed sediment in his urine.   Since I started assisting him with intermittent catheterizations in 2010, he has only had three urinary tract infections (UTI).   Following the first infusion of Ocrevus, he developed number four. Fortunately, he was able to start on an antibiotic and continue with the second dose of Ocrevus.  

Lynn received his second half of the remaining Ocrevus dose on March 26 without any problem. He finished the antibiotic for the UTI the Friday after receiving Ocrevus on the Tuesday of the same week. By that Friday, his level of fatigue was significant.  He developed a cough and was spending a lot of time resting in bed. 

Extreme Fatigue or Something Else

Over that weekend, he had more difficulty staying awake and a rattle could be heard in his chest with each breath he took.

The decline in energy level continued into the next week. He had a problem remaining awake during the day while working on his novel and had difficulty remembering changes made to the plot from time to time. His assistant convinced him to stop working on his book due to a concern that he might do more harm than good.

Behavioral Changes

My most significant concern, however, became the change to his cognitive function and mental health status. He started having episodes where he did not recognize me or where he was.  There were times after he fell asleep for a nap that he would wake up “somewhere else”—in another time and place. He would think I was someone else and ask me about my husband under another name and my children with different names. He would ask when I was going home.  He often thought I was his sister or another relative. Sometimes he would whisper and ask if I knew what “those people in the other room” were up to? I would attempt to help him realize who I was and where he was but was unable to do so. He would be paranoid at times and afraid; other times, friendly and welcoming. It was very frustrating.  I never knew who I might be meeting when I was called to come to help him.

These episodes could last as long as thirty minutes or all night.  I could argue with him about my identity and lose the argument.  He asked me once, “Did Donna teach you how to turn me in bed?  Are you sure you know what to do?” What time do you have to go home in the morning?” 

The Decision to Admit to Hospital

Since Lynn had not had delusions previously with infections or fatigue, his doctor wanted to perform some tests to rule out anything new happening. It had taken the doctor almost a week to call me back from the original request made to him about Lynn’s change in behavior. I explained to the doctor that I had been working with Lynn to reduce what I suspected to be a possible CO2 retention issue, and he was doing much better. Therefore, I was not sure about admitting him at this time.  By adding the inhaler, chest PT and working with him on deep breathing, he had been able to clear up most of the lung congestion causing the previous problem.

All Tests Came Back Negative

His doctor still wanted to admit him to rule out potential complications of the Ocrevus, an exacerbation of MS, pneumonia, other viral/bacterial causes or a recurrence of the subdural bleed from his fall a few months previously. One by one, all the tests were completed and came back negative. Nothing showed up as a cause for his delusions or delirium.

My Theory

I offered my explanation to them.

With the Ocrevus, he became very fatigued.  He developed the UTI further weakening his resistance.  He came in for dose two under that weakened condition exposing himself to a significant amount of pollen. He is very sensitive to plant pollen. It sets off his sinusitis causing copious production of phlegm every year.  In his weakened state, he could not handle the excess mucous. It began to obstruct his airways (creating the wheezing and rattling). He was too weak to make a productive cough, and it started to become pre-infectious. He was getting O2 into his lung, but the CO2 was not getting out. He was taking shallow breaths, allowing his O2 to be okay, but his CO2 was not escaping.  The high level of CO2 was causing confusion. Once he was able to get the phlegm moving as the fatigue was decreased, and the chest PT broke up the congestion,  he could get the CO2 out, and the confusion started getting better. 

The doctors agreed this was a probable explanation and let us go home. Once we got home, he had no confusion…until this morning.

Update:

Today, right after Lynn woke up while he was lying in bed watching television.  He’s been awake about fifteen minutes talking normally about various topics, and I’m about to leave the room:

Lynn: “Did they put the compartment they built to look like our bedroom on this airplane in King William or Richmond?  I know it’s just sitting and not moving but which location did they choose?”

Guess I need a new theory.

This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC and has been reposted with permission.