Thanks for the kind words of support under "Recovery Room." I do stop by here now and then, although I haven't had the energy to contribute much. I had been meaning to "write up" my own case to raise and to raise some questions. I did that today during my 4-hour dialysis session.
I wanted to write up my medical story in a way that would be educational to my PA friends. I think to do so, I would approach it from two angles. The first, as any case report and the second, as a first-person summary of how we medical providers may approach our own health care. I do realize that hindsight is clearly 20/20 and would have things differently now, and some would have done it differently the firs time around.
I will give you story in a chronological form where maybe all the dots don’t connect, or perhaps they do in unknown ways.
Past Medical History:
I am a 63-year-old PA with no prior significant medical history and have never been on daily medications for any reason. I did have a left, left supraspinatus tendon tear (not repairable) in the spring of 2017 when a tree fell on me and a right partial tear on Christmas day 2017 when I fell on ice, climbing a local mountain. Both shoulders continued to give me grief and I was in PT for the past year.
I will also mention that I was diagnosed with MGUS (monoclonal gammopathy of uncertain significance) when it was accidentally picked up on a blood test at age 48. I was followed by hematology at Mayo Clinic for 4 years. The feeling at the time was you could choose to check on MGUS annually or just let it go unless it becomes symptomatic (converts to Multiple Myeloma). When a friend of mine developed MM last year, she encouraged me to “get it check” and I did in July 2018. I had a bone scan, protein electrophoresis, and full metabolic panel. All were normal and the Myeloma spike was lower than when the MGUS was dx at age 48.
The following eclectic collection of symptoms seems to be related to the final diagnosis, although the relationship is not always clear.
The first thing I noticed about my health was changes in my finger nails in early November. My nails began to splinter and developed somewhat of a spoon-nail pattern (Koilonychia). It was new, different, and subtle. It concerned me but I justified that sign with the fact I was building a stone wall and had my hands in (alkaline) cement several days a week.I do think this is related.
By Thanksgiving, I noticed two new, subtle signs/symptoms, which were fasciculations and post-paranal fullness. I’ve always had the tendency toward fasciculations, having twitching every month or so for a few days, for years. It seemed to be related to stress and caffeine intake. The twitching at the end of November was more persistent and was in several locations at once.
The post-paranal fullness was manifest by eating breakfast for then not being hungry at lunch because I still felt full. But it was subtle as well. I had no weight loss.
The second week in December, I suddenly developed a new right C6 radiculopathy. It came on while doing exercises for my right partial rotator cuff tear and without any clear injury.
The combination of the right partial rotator cuff tear and the new radiculopathy was enough to keep me awake for much of the night. I justified the fasciculations as the lack of sleep and very busy work schedule.
I will mention that I work in a pain clinic and did see my colleague, who did a successful block of my right sub-AC tunnel, which helped with the right shoulder pain.
I considered seeing one of my old colleagues, a neurologist, for the fasciulations, but he was out five months. I did make an appointment with my primary care, and he was three weeks out.
In the meantime, I continued working full time during a very busy holiday schedule and I had no new symptoms. I saw my primary care the first week of January. Because he had just worked me up for Multiple Myeloma last summer, and now I had unprovoked right C6 radiculopathy, he decided to start with a cervical X ray rather than an MRI. The cervical X ray was normal but in the peripheral of the exam, the radiologist noticed a questionable mass in the epiglottis area of the trachea and recommended a follow up neck soft-tissue CT. (The CT was normal).
The CT was scheduled on my first day off, January 11th. Because of my age, a renal function test was ordered. I reported to radiology after completing a 4 mile hike with my dog in the mountains.
When I arrived at radiology the CT was done without contrast (and was normal) but I was directed to go to the ED. I as called by my PCP in route to the ED and he explained that I was in renal failure.
When I arrived in the ED my primary lab tests showed the following:
Creatinine 15.5 mg/dl
BUN 125 mg/dl
Potassium 7.0 mEq/L
I was treated urgently with (I believe as I don’t have the records):
kayexalate, calcium, insulin, B-agonists, bicarb, fluids and furosemide.
Since our hospital does not have nephrology services, a referral was made to Peace Health ICU (regional hospital). My potassium was 6.2 mEq/L upon discharge and transfer via ambulance.
My potassium had risen again to 6.5mEq/L and I was treated for hyperkalemia at Peace Health.
The first 3-4 days the nephrologist focused on balancing acidosis and lowering potassium (saving my life), while a diagnosis was pending. The original differential was; 1) autoimmune mediated vasculitis or other cause of renal failure, 2) idiosyncratic reaction to moderate use of NSAID (Naprosyn 400 MG per day for the neck pain and radiculopathy), and least likely, Multiple Myeloma-related renal failure, Myeloma Kidney. It was considered last because my calcium was below normal.
A renal biopsy revealed the present of light chain lambda IgG protein cast deposits in the distal tubules, suggesting the diagnosis of Multiple Myeloma, which was confirmed with a bone marrow bx (30% involvement). A follow up bone scan revealed no boney lesions and until this day no connection has been made to my new radiculopathy. My protein electroparesis showed a IgG Lambda light chain elevation of 2400 (normal is <24).
I continue chemo-therapy and dialysis at the presence 6 week-follow up mark. According to the present course, I am scheduled to start the work-up for a autologous stem cell transplant in April or May. I have returned to work part time. I still have significant fasciculations, post pranal fullness, severe fatigue, and neck pain. These symptoms have only slightly diminished,even though BUN and Creatinine have returned to normal with dialysis.
Some, besides the unusual case questions, there are some specific ones.
1) Mayo Clinic list the follow as signs and symptoms of renal failure. I had none and must have been in severe renal failure for at least a month.
a. Decreased urine output, although occasionally urine output remains normal
b. Fluid retention, causing swelling in your legs, ankles or feet
c. Shortness of breath
h. Irregular heartbeat
i. Chest pain or pressure
j. Seizures or coma in severe cases
(Some other, more extensive lists, mention twitching near the end.)
2) As a patient in general, how do you evaluate vague symptoms? Is the ED the proper place for access if the PCP is out weeks and the specialist out months? Would you go to the ED with changes in your nails? I think not.
3) Should medical providers have the right to order tests on themselves? It is frowned on by insurance companies (fear of over-self-ordering) and by institutions (such as mine). I would have ordered a metabolic panel if I could have.
4) Do we as medical providers sometimes downplay our symptoms?
Other questions for discussion: