Diagnosis – Lupus. However, it took over 30 years before I had a partial diagnosis, and over 40 years before getting the “rest of the story.” Over the years, my family doctor saw a string of seemingly unrelated medical symptoms and blips eventually pointing to lupus.
From the very beginning, signs of lupus in childhood ?
- Staff infection styes and boils caught at the hospital as a newborn, recurred for over 10 years, impacted early immune system.
- Recurring mouth and nasal ulcers from early childhood through adulthood, treated topically in childhood with tincture of myhrr.
- Arthritis symptoms in kindergarden, tests said not rheumatoid, however knees were swollen , painful and stiff.
- Croup recurred 2-3 times every winter from kindergarden until the fifth grade, developed penicillin allergy.
- Recurring painful ear infections through childhood, treated with warm olive oil drops, hot water bottle and mom’s TLC.
Severe anemia in 2nd grade, followed by several years of sustained release iron supplement therapy.
Unexplained skin rashes in summer after third grade, blamed on “sun allergy” triggered tending my strawberry patch.
Diabetes tests in fourth grade, repeated stupor-like naps followed every Saturday morning pancake and maple syrup breakfast (grandma had type 2 diabetes,) and was placed on diabetes diet for several years.
Persistent erythmatous red neck rash in fifth grade, attributed to some “unknown allergen” – treated with steroid cream.
- Unexplained 105 degree fevers without evidence of infection at the end of summer before middle school.
- Quiet healthy period of extreme physical fitness as a competative gymnast in middle school and early high school.
- Tonsillectomy as a high school sophmore, after infection ruptured tonsils and infected salivary glands (popsicles tasted bitter… yuck!)
- Diagnosis of severe allergy to jalepeno peppers! I had to learn to read the labels on chili cans as a teenager to keep out of the emergency room.
- Unnamed systemic illness with lung infection, “mental cloud,” muscle tremors in legs, laryngitis, extreme fatigue, digestive system disruption, and loss of short-term memory from fall and winter of senior year, diagnosed as a systemic viral syndrome of unknown type.
- Diagnosis of “irritated colon.”
- Recurring migraine headaches.
- Diagnosis of hypoglycemia, placed once again on the diabetes diet.
- I remember many days and weeks when I felt mentally foggy, found it difficult to study, and felt the way I do now when CNS symptoms are flared.
- Severe auto accident at 27 caused soft-tissue injury that required three years of physical therapy, onset of lingering deep bone and joint pain as a young wife and mother, symptoms lingered from cervical spine disc injury.
- Increasing arthritis between mid-20s and 30s, recurring with increasing severity, treated with high dose aspirin therapy and anti-inflammatory drugs, Aspirin, Naprosyn and other OTC NSAIDs.
- Recurring erythematic discoid rashes on face, neck ears, chest, hands, arms and legs treated with oral and topical steroids.
- Recurring sinus infections, bronchitis and/or pneumonia treated with oral steriods and nasal steroid inhalers.
- Extreme seasonal allergies developed, with dry eyes and inflammation of nasal and eye tissues.
- Recurring cluster migraines including disrupted vision, requiring narcotics to break pain cycles.
- Recurring nasal and mouth ulcers, lasting for weeks at a time, treated with presecribed topical antibiotic ointments without much effect.
- Severe joint stiffness and pain decreased mobility involving hips, knees, ankles and hands, treated with oral steroids, robbing sleep and making even walking through a grocery store excrutiatingly painful.
- Cycling between steroid treatments for the rashes, respiratory infections, joint stiffness and pain, family doctor begins doing battery of tests and expresses concerns about continuing need to treat with steriods too frequently for multiple conditions, continuing without more answers would be medically irresponsible.
- Failure using aspirin, motrin, naprosyn and all other OTC non-steroidal anti-inflammatories due to profuse bleeding and severe digestive pain.
Zeroing in on the answer…
- Doctor and patient agree: I am “too young for this” at only 30 years old
- Family doctor battles insurance company to pay for expensive ANA test (then it cost $1,500 and had to be sent from Arizona to a lab in Texas) and wins the appeal
- Family doctor calls and says I must come right in to his office to talk, the tests pointed to a possible answer
- Lab results: negative rheumatoid, negative SED rate, positive anti-nuclear antibodies (ANA) of 1:400, family doctor is excited to tell me he finally knows where to send me, saying “if I am right, you’ll be doing handsprings in a few weeks”
A specialist gets involved…
- Referral to a rheumatologist, more tests, xrays, exams, medical histories, etc. and ANA is really 1:1280 because the rheumatologist’s favorite lab knows how to do it correctly
- Cautious to diagnose, the rheumatologist’s first preliminary official name for my illness was “abnormal high anti-nuclear antibodies with lupus-like poly arthritis.”
- Not sure how that would go over with friends, family and co-workers I just said it was “something similar to rheumatoid arthritis with a longer medical name.”
- Treated with plaquenil (anti-malarial) and the only tolerated NSAID sulindac (an old seldom used drug, but my one and only NSAID option), within a few weeks symptoms quieted considerably.
- Online medical journal research (pre-internet) at the county law & medical library trying to learn about ANA and more about my illness only led to two major hits: rheumatoid arthritis and lupus.
At 40 something, during the weeks after my mother died, brought the rupture of an abdominal artery leading to reproductive system and loss of 2 liters of blood, required life-saving emergency surgery and blood transfusions – hospital doctors and nurses were the first to say it was “lupus”
During next annual eye exam (plaquenil protocol,) the opthamologist commented about scratches on my dry cornea caused by sjogren’s syndrome (dry mouth/dry eyes,) secondary to my “lupus” and said he planned to tell the other doctor it was simply time to start calling it lupus (SLE,) and gave me samples of different eye lubricant drops to try
Now, I can finally tell people what I have. Lupus.
At my next rheumatologist visit, the diagnosis on my treatment paperwork was finally specific: systemic lupus.
In the year that followed, lupus began attacking the central nervous system, and flared in cycles of escalating severity, treated with high doses of plaquenil and steriods, but could not be successfully withdrawn. Eventually, adrenal suppression manifested and the steroid-sparing chemotherapy drugs methotrexate, and later azathiaprine were added.
Over most of the next 10 years, medications were adequate until lupus began attacking my liver, elevating AST and ALT levels.
Every other possible cause was ruled out and lupus was the culprit.
Methotrexate and Azathiaprine contraindicated and were withdrawn and the new biologic Rituximab was administered in two all day infusions.
For the past few years, the biologic drug induced a pronouced quieting and near remission of my most severe lupus symptoms
My general health and well-being were significantly restored.
At 50-something, I feel much better than I did at 30.
In retrospect, the diagnosis of lupus now seems so much easier to see clearly. My story is not unusual, since most lupus patients see 4 or more physicians and find it takes 5 or more years to get a diagnosis.
Medical studies show that early diagnosis and treatment is the single greatest factor in reducing severity and mortality in lupus patients. The key to treatment is diagnosis, and the key to diagnosis is medical information about lupus and the ability to see an accurate medical history that shows the multi-system manifestations that viewed together point to lupus. A history with one physician who really knows the patient may help give the necessary perspective.
Now, I wonder if my diagnosis had come sooner, would my lupus have been milder? The evidence suggests “yes.”