(This is dedicated to those of us who have struggled to find or are currently battling to discover a diagnosis that leads to healing…..)
Since meeting a new group of friends during my thru-hike of the Appalachian Trail in 2011, the four of us have made a point of tackling new adventures together each year. I was talking to my hiking buddy from Charleston early in the summer of 2020. We decided to search for an “epic adventure”. Long distance hiking trails were not recommended because of COVID, so we had to look elsewhere. We finished a 50k the past December and the same sponsor organization enticed us with a 24 hour event: mile and half loops around a defunct golf course. We signed up because one of us said, “I’ll do it if you do.” So four of us were in, my buddy and two other hikers who were part of our “team.” We knew we might not be able to move fast, but history told us that we had slow and steady endurance on our sides as we committed to tackling this new adventure.
The race was scheduled for Sept. 18th. I’d trained all summer. By mid-August my training times had increased significantly. I would get out early trying to beat the summer heat. My last long run looked like this:
I’d been on the road for a couple of hours. It was almost time to head into the sunrise. I’d been out since 4 am weaving my way through the main streets of my small town. I wore a headlamp although I felt secure with little traffic, lampposts and sidewalks. I basically followed a “T” shaped path through town, many times over, with little variance because the town is that small. I had run over ten miles before the sun appeared. Despite my headlamp, I don’t leave the safety of town before heading into the surrounding darkness, with no street lights and drivers not expecting a small light bouncing on the side of the road heading toward them.
It soon becomes time to head out and the new scenery breaks up the monotony of the run. I run along Railroad Street and cross on a bridge over the highway: traffic light but whisking its way below me. I finally turn left into where I will face the sun, but early morning fog billowing off the river greets me. I part the fog with my orange shirt, still wearing my headlamp. It is not until the river pulls away from the road and drags the fog with it and the trees give way to farm land, that the beginnings of a new day appear. That pre-rise glow appeared over the hills, turning the trees orange. The farm animals grabbing the early morning warmth, while shaking off the damp early morning fog,
The view lifts me after the routine of town. I don’t look forward to the added warmth of the sun. i eventually turn back towards town. The next leg of my journey brings me back into town, out the opposite side where I will face hills but with lots of shade that will protect me from the uprising of the sun’s rays.
The return to town opens to expanses of farmland awakening, but raising my eyes towards the west, I take in some of the highest mountains in the eastern US. It is an expansive view and somewhere beyond the first range hides the highest peak in the east, Mt. Mitchell. I put in 28 miles that day, finish back in town in the heat with Becky bringing cold drinks to fuel the finish.
My training has gone well through the 28 miler; I had planned a 30 miler before the race but my back doesn’t hold up and I never do the 30. Somewhere along the way, I injured my back. I suspect it was from pouring concrete timbers, lifting and twisting buckets of concrete to complete a new shop on my property. I try to put in half the miles of my long run a day or two after. It doesn’t always work out. I know my body. I know what to run through and when to back off from training, but this time I go out anyway despite the warning signals.. A planned 14 mile run turns into 2 and a ½ mile journey due to multiple injuries. First I fight a calf pull; I imagine I can run through this, but I hobble quickly and struggle to the house with two calf pulls, two hamstring pulls and one quad pull. My training is done. In hindsight, I wonder if this is a precursor to what is to follow.
What follows is my journey to diagnosis and treatment. There are a few personal notes included. The little energy I had was focused on research and the development of the time-line that would help doctors help me.
Sept 18, 2020 Race Day I don’t know what to expect. I have basically given up on any training when I hobbled home with my multiple injuries. The course is a 1.5 mile loop through an abandoned golf course. It is a relatively flat course. With a climb to the finish, which even the strongest runners walk. The first lap is a discovery; Becky, my wife, travels with me. We mostly walk. Just before the climb at the finish, we dodge a runner from behind and Becky falls. She is injured. It turns out to be a break in her elbow. I toy with the idea of leaving and taking her to the hospital. But my sister is on the way and I start the next lap and I just keep going, with little stopping. A little over 12 hours and 41 miles of a 24 hours race, I decided to call it and get Becky home to a comfortable setting and her own bed. An ultra runner told me that running an ultra 97% mental and after a pause “the other 3% is also mental”. This holds true for me during this race.
October 6, 2020 Very limited running and strange sensations when I move leads me to the doctor and a recommendation for an MRI. Each movement, whether coming to a standing position or moving an inch while prone, brings an increasing pain through my body for ten seconds. The MRI shows SI damage. It takes a month to get into the pain clinic and another month to get the steroid shot. It is here that I begin to be proactive and I find another doctor who can administer the shots two weeks sooner in mid December. My body has been swelling and pain is creeping from whatever is happening to me. It is very difficult to determine the difference between my back problem and the other problems I am having.
October 28, 2020 and I am headed to urgent care after running a low grade fever and dealing with a dry cough for 6 weeks, beginning just after the race. Tylenol would take care of the fever but it would usually return after the tylenol wore off. I would usually run/walk two or three miles when the fever subsided. A Covid test was ordered, I guess out of caution because the PA agreed with me; the symptoms had been with me so long. It was negative as were the approximately ten future Covid tests. A chest x-ray was ordered. I agreed to the test despite having no chest discomfort. No issues were discovered with the x-ray. I was prescribed antihistamines.
Oct. 30, 2020 The x-ray impressions read, “No evidence of cardiac or pulmonary disease. Heart size and pulmonary vascularity are within normal limits. The bony thorax is intact.”
Nov. 13, 2020 Cough continued with no improvement with the antihistamines. Low grade fever and fatigue present as well. Another visit to urgent care and symptoms remain the same. Possible eosinophilic esophagitis. Possible referral to GI and Pulmonary. Blood panels ordered. Continued use of Prilosec.
Nov. 20, 2020 Blood panels taken earlier in the week are askew. Unfortunately, I have some good days and my family doctor thinks I am over whatever has been ailing me. She explains the blood work as being out of sorts because of the viral infection I have been suffering through. We blow off further referrals. My new found wellness is short lived. My fever and fatigue return soon along with new symptoms.
Dec 4, 2020 My new symptoms are noticed by Becky as we are walking around town putting on a 5K with the kids and grandchildren on Thanksgiving Day. We are raising money for the Alzheimer Association in honor of my dad who passed away in August. Near the end of the walk, Becky notes that my legs appear swollen. My first thought was because of afib that I might have a blood clot. I touch base with my cardiologist and we both suspect that it is not a clot, since the swelling is not localized and in both legs. The Echo is ordered, just in case but found to be unremarkable. At this point, I notice no muscle weakness or pain. An echocardiogram is ordered. PCP ordered Levaguin.
December 2020 and I have made the decision to finally have an ablation. In my mind was a 10 year anniversary hike of the Appalachian Trail; I want to do it again. The decreased time between afib episodes would definitely get in the way. An EKG was ordered and returned unremarkable.
December 11th–Message to PCP concerning swollen lymph nodes under arm, fever and leg and ankle swelling. Legs are sore to touch. Lab Work ordered
December 15th-PCP ordered a second round of Levaquin and suspected swelling was related to kidney function issues found in bloodwork and infection was causing fatigue and muscle pain. During this time, I received steroid shots for my back pain. Noted some improvement in the back.
December 28th–Saw PA at Internal Med office due to the fact that PCP was out of office. Major symptoms of concern at that time were anemia ( suspected GI Issues) and fatigue (ordered stress test to rule out cardiac issues.) Swelling continued especially in lower extremities.
January 4th–Virtual visit with GI. Scheduled endoscope and colonoscopy to rule out GI issues causing bleeding. Voiced concerns about low protein and albumin levels.
January 11th—Follow up with PA. Lab Work continues to show anemia, low protein and albumin, high platelet count and other abnormalities. Symptoms continue with edema around the midsection and in arms. Fatigue continued to be debilitating. Chronic cough continues.
January 12th completed a stress test with no issues, although it was difficult because my legs barely function.
January 13th— Chest x ray ordered showing possible pneumonia. Ceftin and Doxycycline prescribed.
January 21st–Endoscope and Colonoscopy performed. Esophagus stretched to correct dysphagia and tissue samples taken. Prescribed Priloec for GERD. Tissue samples showed infection in the esophagus.
January 25th– Visit with PCP. Symptoms: persistent cough that is productive, low-grade fevers daily, severe fatigue, swelling all over body, muscle pain and soreness and well as joint pain all of which has worsened over the last month and continues to progress. Began taking Iron due to anemia. Referral made to Infectious Disease and Pulmonology.
January 28th–Saw Infectious Disease Doctor who reported symptoms of chronic cough, anemia, lung infiltrate and leg pain. (My swelling was still present and fatigue was debilitating.) Ordered chest CT and taking Nyquil Severe Cold and Flu and a variety of blood work.
February 3rd— Pulmonologist. Lung nodule seen on CT not present on previous xrays. Seemed unconcerned. Couldn’t explain the cough. Ordered sputum cultures. Follow up in 6 months.
February 4th – Visited ER on advice of Infectious Disease Dr. Symptoms were highly present-Swelling, fever, muscle pain, cough Prescribed Levaquin. This didn’t change my fever or cough.
February 8th–Saw Infectious Disease Dr. He stated that blood work, not sputum samples, showed Pertussis. Ordered lab work for possible fungal infections as well stool samples looking for parasites.
February 11th- PCP suspected allergy to Xarelto. Switched to Eliquis and began a taper dose of Prednisone–40mg-10mg. Fatigue and swelling decreased slightly, fever dropped, cough continues and muscle pain is worse and occurring in new places like wrists. Muscle atrophy is very noticeable. On taper to 10 mg, most symptoms began to worsen. PCP ordered 20 mg daily. PCP said that Pertussis was not a correct diagnosis as I recently had a whooping cough vaccine, thus the antibodies picked up in the blood work. She referred me to the infectious disease department at Baptist Hospital.
March 2 – Visit with Baptist infectious disease department. With lab work completed, the doctor suspected an autoimmune disease and referred to rheumatologist and allergist.
March 5– Dr. Z (my rheumatologist) suspected Polymyositis. Becky through her research had come to the same conclusion the night before. Doctor Z noted weakness and swelling. She was concerned of possible cancer. She increased prednisone to 60mg. As we were driving home, about 30 minutes from the office we had a call to return and have an EMG conducted. No significant neurological conditions were found.
March 11 Consult with Allergist determined that I needed different treatment than he was able to supply.
March 21, 2021 Today is a dark day. My muscles have atrophied, my body is swollen, movement restricted and it is difficult sitting and standing. I have nothing on my calendar to look forward to. All I see ahead is more pain and despair. The waiting and the unknown bury me in hopelessness.
March 23- Muscle biopsy conducted
April 2- Dr Z still doesn’t have biopsy results. Started methotrexate, folic acid and Fosomax. Began tapering of prednisone. Referral to neurologist and physical therapist.
April 14– Dr. Z confirmed dermatomyosits based on muscle biopsy.. Symptoms have increased since last visit. Increased prednisone from 30 to 40 mg. Referred for lung nodule and extensive GI exam to rule out cancer.
Other things that I have noticed since this began:
I often have flushing, especially after eating.
I can only sleep on my back. Pain in the rib cage/abdominal area prevents side sleeping.
Some days, the muscles in my thighs literally harden and increase in stiffness.
My muscles feel weaker with decrease in swelling. Pain isn’t the debilitator: my muscles are.
April 29– First infusion
May 7 – Dr. Auchobon, a neurologist performed another EMG and reported a normal finding. Inflammation in blood work created a concern of peripheral vasculitis. (A future referral to a dermatologist and a skin biopsy disproved this. Dermatologist found a rash on my scalp and treated me with shampoo. I did have a future follow-up also with a hematologist, but there were no blood issues found.)
May 27– Second EMG- Same results- Note that I can use a walker now instead of a wheelchair.
January 24, 2023– After 20+ infusions, I can sit, stand, shower and walk on my own. I can hike. I look forward to each day. It does aggravate me that one of my legs is still largely numb. I am baffled that my right quads don’t seem to respond to exercise and measure nearly two smaller than my left. I still have balance issues but I am beginning to run again, slowly and with a limp.
Again, there are very few personal notes in this timeline, because it wasn’t my focus. Next week, I head for my 24th infusion. I have been told by my rheumatologist that this is in all likelihood a lifelong thing. I really don’t mind; it is part of my life now and the alternative is not a pretty picture. I have left the wheelchair behind, as well as the walker and crutches. I no longer need a raised toilet seat or fear the six inch lift heading into the shower, nor hate the feel of the water pouring on my skin through the shower head.
I don’t spend a lot of time dwelling on who I used to be. I get up every morning and try to learn what I can not do but more importantly what I can do. This year, I will go on bike trips, run (a generous verb given how the disease has left me) a half-marathon and hike again on the AT. Most importantly, I will plan another year to be around with family and friends.
Musings of an Old Guy with an Unwanted Companion in a 140 Year Old House 