In pursuit of an answer for breathing difficulty
The MRI of my cervical and thoracic spine showed no active lesions last week. That was good news. Other recent and historical tests never resulted in any explanation as to why I have a persistent cough, hoarseness, and recently chest pain and breathing difficulty, but it is not MS.
Finally, when I went to the first session of pulmonary (lung) physical therapy last Friday, the therapist casually said, “So you have chronic bronchitis?” I was taken aback. My doctor had not told me this.
As has been said many times before, MS is not always the cause of health problems.
“Inflammation” has triggered clogs of mucus in my bronchial tubes that is too thick to disperse, causing me to cough and making breathing difficult. Sjogren’s causes inflammation and the characteristic dryness and thickened mucus that narrowed the tubular airways. Kind of like clogged arteries.
Pulmonary (lung) rehabilitation
Because of my MS, I was very concerned as to how I could possibly do “cardio” exercises to strengthen my ability to breathe. My legs “work” only for a short distance or time. I was right to be concerned. The pulmonary therapy people were used to working with recovering heart surgery patients who have no compounding issue with walking. From the guarded shock on their faces as my ability to walk slowed, became jagged, shuffling, and finally I could not take one more step, I could see this definitely was going to compromise my pulmonary rehab.
After exertion, fatigue completely wipes me out to the point where I must sleep for several hours. This reduces the time available to me to actually live life. But I have to do something to try to improve breathing, even if it means more napping.
Brain to leg: Lift! Leg to brain: No response
I still find myself surprised by what having MS causes me to experience, which is weird because I have lived with these experiences for many years. My brain tells my leg to lift, but nothing happens. It is hard to understand, and when it happens I am shocked, freaked, and terrified.
How weird is that? I am going to research this phenomena a bit to try to understand it better and will report back in another column.
Exhausted in rehab
When I went into the rehab facilities I was walking just fine. I had overdone activities the day before, so I slept late and was well-rested. Once set up with a monitor, the first test was to walk for six minutes. There was an orange traffic cone 100 feet down the hallway that was the marker. It looked very far away. I could not recall the last time I had tried to walk for six minutes straight.
Short version: I could not do it.
After sitting quietly doing some nutrition paperwork, they had me get on a recumbent stair-stepping machine. The machine is adjustable for how much resistance you want to use. I started at 5 (of 10), but not for very long. The goal was to do the stepping for 10 minutes. I scoffed because I know my limitations, and having walked the five-or-so minutes already, I knew it was simply not possible to “step” for 10 minutes. But I tried.
After about two minutes the pain in my chest became so severe I had to stop. The force was reduced to 4, but I still could manage only about another minute.
When I tried to get off the machine, I found I could not walk. The nurse had to get a wheelchair. I don’t think they had seen the consequences of overexertion on someone with MS. They were concerned that I would not be able to drive home. I explained that with MS, needing the wheelchair to get to my car was going to make it possible to drive home (only three minutes away).
I just read a news post on this site and it discussed secondary progressive MS. That made me wonder if perhaps I have flipped from RRMS to SPMS. The article mentioned fatigue and limited leg movements. I will have to talk to my neurologist and research what it means to change to SPMS.
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