Mostly an accumulation of unblogged material from the past — on, however, a topic that’s immediately relevant to my current medical treatments (stemming from two doctor’s appointments on 11/21), which I’ll get to eventually. But one thing at a time: start with the background.
Osteoartritism. From my 6/2/23 posting “An epiphany from 5/23”:
Preparing for an appointment with my rheumatologist on 5/23 led me to the understanding that the affliction I’ve been thinking of as osteoarthritis is indeed not that: joint tissue is not being degraded and eroded, as was the case with my right hip joint in 2012 (when, after the excruciating pain of bone grinding on bone, I got a titanium replacement joint). So, my doctors have been careful to say that I have joint pain but not to attribute the pain to osteoarthritis (though I doubtless have some degree of that).
In osteoarthritis, some of the joint is lost, so there will be chronic pain, in the same spots, though worse on some days and better on others. (Very low air pressure will trigger intense pain, and I certainly get that, omigod do I get that, all over my body.) But my pain is fugitive, moving from one joint to another, often over minutes, or an hour or two. And there are a hell of a lot of joints in the body — in the fingers and toes, wrists and ankles, knees and elbows, hips, and shoulders. (My bunions — hallux vagus is a swelling of the first joint of the big toe — often provide the first notice of a drop in air pressure, through their agonized throbbing.)
In addition, the pain is often extravagant. There were, for example, three nights when I awoke screaming in pain in my left ankle; the heel of my left foot was on fucking fire (but not hot to the touch). The fire subsided in a little while, but that foot was so tender all morning that I could barely walk.
My epiphany of the morning of 5/23 was that the affliction I’ve been think of as osteoarthritis is indeed not that (joint tissue is not being degraded) but — oh dear — an autoimmune affliction that mimics osteoarthritis.
Which, in later writing, I referred to as osteoartritism.
My other most spectacular chronic autoimmune condition is DoE, dyspnea on exertion, a paradoxical shortness of breath on major exertion (like walking) that was eventually demonstrated (by my pulmonologist) not to be asthma. It’s paradoxical because I could talk just fine during DoE and because it wasn’t triggered by vigorous use of my lung capacity; I could do shape-note singing at high volume for two hours, with hardy any breaks, without triggering DoE — but then when I stood up to walk to the car, I wouldn’t get very far before the DoE set it and I had to stop to catch my breath.
The DoE set in suddenly several years ago during a very hot spell, and has persisted since then, except for about two months when I was on a fairly high dose of prednisone (for other mystery afflictions), when it vanished utterly, as did the osteoartritism. Well, it persisted until several weeks ago, when it just disappeared; I suddenly realized I was walking, sometimes for fair distances, without any shortness of breath. Delightful, but I have no idea why the DoE abated. (Terrible thought: maybe it’s relapsing-remitting, like multiple sclerosis; it could come back.)
Probal Dasgupta’s little lecture. On Facebook on 9/15:
— PB: A quick lesson about autoimmune diseases. It takes an average of 3 years and 5 doctors for a person to get a proper diagnosis of an autoimmune disease.
… Achy joints and bones, dry skin, breaking hair, mood swings, and depression are just the tip of the iceberg. You are also prone to having multiple autoimmune diseases.
— AZ: I am a giant morass of autoimmune disorders, most with no names. Appropriate medical care is virtually impossible to get.
— PB > AZ: You bear it with incredible grace, Arnold, you manage to make it all look easy to take.
— AZ > PB: Thank you. I’ll make one complaint here or on my blog, usually as part of a larger tale, sometimes just in passing (as I did recently with my swollen and painful middle finger), and then not mention it again. No one wants to hear constant whining, and anyway I’m determined to work through or around these various afflictions, though they are hugely disabling. And sometimes literally depressing. But I cope as best I can; apparently that coping looks like grace — maybe it *is* (a kind of) grace — but mostly it’s just (figuratively) putting one foot in front of the other.
My red, swollen, and painful middle finger (on my right hand) was an occurrence of osteoartritism. I now have some insight on that, but first a few notes on PB:
Digression: Probal Dasgupta. From Wikipedia:
Probal Dasgupta (born 1953 in Kolkata, India) is an Indian linguist, Esperanto speaker and activist. Dasgupta’s interest in linguistics started at a very young age. He published his first article in phonology at the age of eighteen in Indian Linguistics, the journal of the Linguistic Society of India. His 1980 New York University PhD dissertation Questions and Relative and Complement Clauses in a Bangla Grammar is considered one of the seminal works in Bangla syntax.
Apart from syntax Dasgupta has worked and written a great deal on morphology and sociolinguistics. He has developed a new approach to linguistics, called Substantivism, in partnership with Rajendra Singh [at the University of Montreal], whose approach to morphology (Whole Word Morphology) forms part of the substantivist programme.
Outside of formal linguistics Dasgupta has written extensively on topics in Esperanto studies, sociolinguistics and literary theory. In his many writings he has also been vocal about political and social issues. “The Otherness of English: India’s Auntie Tongue Syndrome”, in which he talks of the situation of English in India, has led to various debates on the social implications of the presence of English in India.
Two doctor’s appointments. We now spring forward to 11/21, when I had two routine follow-up appointments with medical specialists: first, with my nephrologist, Dr. Luis Alvarez — I have advanced kidney disease (this will turn out to be relevant), hence the nephrologist — and now the primary monitor of my medical condition. Then an hour or so later, with my rheumatologist, Dr. David Fischer. I had had a huge collection of blood and urine tests done for them the previous Friday, so they both were sifting through this mass of material, as well as observing me as a living person in front of them.
LA noted that there was nothing new in these tests — though he missed one thing — and that I appeared to be in splendid health; right now, people comment on the wonderful state of my skin, my buoyant disposition, easy well-balanced movements (standing up and sitting down, walking, using my hands, and so on), and I feel great (plus, my sex drive tells me I’m in good health). Well, yes, I have some red and swollen fingers, but they don’t hurt at all, and I can make tight fists and wiggle my fingers like crazy, which is much better than the last time LA saw me, so that was all good, and just the old unsolved autoimmune mystery. He told me to schedule the next follow-up appointment in six months, and before I gave the expected response, told me he fully expected me to live until then and long after; he knows I see every day I live as a gift, so that an appointment in six months would strike me as a lot like an appointment on the moon.
What he missed in that battery of tests was a lot of protein in some very cloudy urine. DF caught that right away, said it looked like a urinary tract infection, arranged for me to get a urine sample taken immediately so it could be cultured for bacteria. Done that day. Results back on 11/24, with the results in this lab report:
Greater than 100,000 cfu/ml Klebsiella oxytoca (This organism is INTRINSICALLY RESISTANT to Ampicillin, Ticarcillin)
Nasty bug in the urethra; it belongs in the gut. DF then called in a prescription for, as he wrote, cipro (ciprofloraxacin, a fluoroquinolone antibiotic used to treat a number of bacterial infections), to be taken twice a day for 10 days. The cloudiness of my urine disappeared after the second dose; I didn’t have any other symptoms perceptible to me; and I blessedly had almost no side effects from the cipro — so that was a breeze. I’ll take the last dose before dinner today.
But autoimmune conditions, we were talking about autoimmune conditions. And there DF had a suspicion. He fixed his attention on my finger inflammation, did not (as various medically trained people have been inclined to do) leap to the idea that it was cellulitis, with an entry wound too small to be noticed (an idea I then have to argue down with facts). Instead he thought it looked like gout (which can, it turns out, be pretty diffuse in its sites of manifestation, not just the famous big toe). The pain comes from urate crystals deposited in joints. Little needles. If not treated, it can do real damage to the joints.
Gout is an inflammatory arthritis (so sometimes called gouty arthritis), distinct from osteoarthritis (which is degenerative) and rheumatoid arthritis (which is autoimmune). Research now indicates that it too is autoimmune (remember that a big dose of immune-suppressing prednisone made it go away for me), but manifests itself differently from RA. Gout is, sigh, commonly associated with kidney disease.
But gout was just DF’s hunch. The thing to do next was look for uric acid in the blood (uric acid wasn’t in the battery of tests I’d just undergone). So: back to the lab for blood tests, on 11/28. These came back with high levels of uric acid; DF and I scheduled a phone appointment for 12/1, in which he outlined a course of treatment centered on allopurinol (which reduces uric acid in the blood and helps to dissolve urate crystals); plus a small increase in my “maintenance dose” of prednisone, from 5 mg a day to 7.5 mg a day, to facilitate the allopurinol. The allopurinol takes a very long time to have its full effect — a year or more, it seems — and might cause a temporary setback in joint pain at the beginning. There’s also a 1% chance of an allergic reaction, a skin rash. The medication orders are still being processed, so I have as yet no reports on the drug experience.
At the moment my hands and feet (and elbows and knees etc.) are all quite happy, despite the finger (and knuckle) swelling, so I am apprehensive about losing this wonderful freedom. But terrible joint pain is an old acquaintance and I know I can survive it, though with a certain amount of shrieking and weeping. (It’s a good thing I live alone, in a condo with pretty good sound insulation.)
December 4, 2023 at 2:41 pm |
I think that over the years on your blog that I have learned more about rare and spectacularly terrible maladies than from any source other than the TV show “House,” which specialized in such arcane diagnoses.