Mystery Illness for 43 Years

Our property covers four levels from the street to the lowest garden area. The main house where we live is mostly on one level. For four years, the climb for me ranged from moderately difficult to torture, with my having to stop and rest multiple times before making it to the top because of breathlessness.

My serious shortness of breath began about 1993 and at the time I thought it was because I had moved from Germany to a town in Colorado that was over 8,000 feet elevation. But even as far back as my late 20’s I couldn’t even begin to play tennis, racquetball, or take an aerobics class. I was 29 when an aerobics instructor would not let me continue until I saw a doctor because my heart rate went too high too quickly. I was confounded by seeing older and much heavier people ride a bike. And I weighed less than 100 pounds and was otherwise healthy. I met Steve in 1995 and he thought I was just out of shape. We went skiing on our second date and I had no problems going downhill. But no matter how often I rode my bike on flat ground, I could barely ride the inclined short block from my house up to the next street.

My shortness of breath grew worse and I began having sudden episodes while sitting or standing still. About 10 years ago Steve insisted on taking me to Urgent Care who referred me to a cardiologist that saw me the next day. Every test indicated I had a healthy heart. I had a stress test three years in a row but each time the nurse raised the incline, my blood pressure and pulse rate sky rocketed and I was gasping for air. The nurse would then stop the treadmill. I was officially given a poor prognosis but the cardiologist couldn’t give me a diagnosis and referred me to a lung doctor who also could find nothing wrong.

Over the years, I developed other symptoms and presumed that this is just how it is as I get older. I had no clue the symptoms were all related.

It all began one day 43 years ago when I thought I was coming down with a virus. It’s hard to explain but you all have experienced it at one time or another. Except the overwhelming lack of energy, fatigue, and overall crummy feeling lasted for months and then went away for a few months, only to return again and again until it was constant.

Chronic sinus problems that I called vapor lock woke me because I couldn’t breathe out of my right nostril. The top of my nightstand was stocked with Vicks, nose spray, inhalers, cough syrup and more.

It was 30+ years ago that random hot flashes came over me and I was still too young for menopause. In 2012 I began having drenching night sweats that came in spells with a pauses of several months between them until it was an almost nightly occurrence.

About 10 years ago, I had an episode that lasted about a month where any talking caused an irritation in my throat that made talking and breathing difficult. My mother was sure I had asthma and I went to the doctor. He couldn’t find anything wrong and prescribed tranquilizers. Why couldn’t he just say he didn’t know what was wrong? As time went on, this happened more often and I instinctively learned to modulate my voice lower and not talk too much and to definitely never laugh.

Around the same time, I would occasionally wake up at night with a cough where it felt like there was a dust or a hair deep down my throat. A few years later the hair feeling became more like a very tiny stiff fiber. I presumed it was because our dog Molly slept with me. I removed her from the room and washed all the bedding and cleaned the carpets. As time went on, the night coughing got more violent and truly frightening. I obtained an inhaler which put a stop to the cough episode immediately. That inhaler was never more than 2 feet from me.

About six years ago earaches began in my right ear. The aches ranged from a general ache to just below my ear to sharp pains inside my ear. This was daily. I told every doctor I saw about the earaches and even went to an ear nose throat specialist January 2020. Nothing.

Four years ago I had what I thought must be anxiety. I would get a sudden sinking feeling in my stomach. This went on for a year before I grabbed my oximeter that showed my heart rate was 47 and quickly climbing back to normal. I bought a smart watch to track my heart rate and discovered the sudden plunges were occurring several times a day.

There wasn’t a day that went by that I racked my brain trying to figure out what was wrong. I researched afflictions from granulomatous to sarcoidosis to leukemia. Other than the earaches, I quit telling any doctor anything about all of these problems. If you were a doctor and a patient rattled off all of these problems, what would you think? A classic hypochondriac for sure.

In the USA we must have a family doctor in order to get referred to a specialist should the need arise. I saw my family practice nurse each year but told her nothing because it was a waste of my good breath. Until October 2020 when, as a by-the-way, do you think this lump in my neck could have anything to do with the fact I always feel like I have a virus? Up until now, I had never mentioned the lump, which was visible from across the room. In past years, various doctors commented that I had a goiter or just said “you have a swollen neck on the right side”. I just thought it was a swollen gland. The nurse practitioner thought it was lymph drainage.

As it happened, I had a ear, nose, throat (ENT) specialist appointment the next day for the sinus blockage and the family nurse practitioner said to mention the lump to him. I did and he felt it. This was the FIRST time any doctor felt my neck and you remember I saw an ENT doctor earlier in the year for my earaches on the right side. She should have known better.

The new ENT doctor said I needed an ultrasound and possible biopsy. I wasn’t alarmed because I always aced every medical test given to me. He thought differently and gave me a spot ultrasound right then and repeated that I needed a biopsy. I told him it would have to wait a few months because we were returning to Mexico in two days. He got me in for a biopsy the very next day. The pathologist began by saying “if you are going to have cancer, thyroid cancer is the one to have”. Not. There are four different kinds of thyroid cancer and not all are the “ones to have”. Anyway, I still wasn’t concerned.

Long story short. I was diagnosed having rare Medullary Thyroid Cancer with less than 1,000 cases diagnosed a year in the US. My version of it was even rarer with about 5 cases per year. My right thyroid, the tumor and 12 lymph notes were removed and immediately every single one of the above symptoms disappeared.

….to be continued….

Down the stairs or up the stairs, it doesn’t matter anymore.

2 comments

  1. Pingback: Mystery Illness Solved « Wanderlets


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