Posted 5/28/2014 6:17 PM (GMT -7)
I had my rheumatologist appointment today. On the patient questionnaire (that has you check mark anything that has ailed you—and has the skeleton figure to highlight your symptom areas—and the part at the very top that asks you to describe your most concerning symptoms at this present time)—I had listed my foremost concern at this present time is my throbbing, stabbing (ice pick) headaches that I’ve had for five weeks.
Sure, I have plenty of other symptoms, but this one has had me worried, especially after I did some research. With my reduced vision (now wearing regular eyeglasses, not “simply” having a pair of readers in every room), jaw pain (couldn’t even chew gum on the drive to Billings), sore throat, crazy ear ringing, my poor tender, tender scalp, aching/painful neck, and achy/ouchy shoulders, I thought I might know what I had and that I shouldn’t mess around with it any longer.
Dr. Oliviera did an exam, but focused on what he was looking to confirm. He asked me if I’d ever heard of Temporal Arteritis, also known as Giant Cell Arteritis. I told him “yes,” and he wanted to know how—so I told him that I was doing some research and one thing led to another and I discovered this disease. (Ha—he was impressed.)
He believes my symptoms also tie it into Polymyalgia Rheumatica. Boy, oh boy, of course it’s almost ALWAYS found in us older folks, not the youngsters. ;)
That was the gist of our visit. I had taken pics of my poor toes, a mouth sore, and my malar rash, but those were not his main focus at this visit. He also wanted to have an ANA titer value, which my primary did not get with the lab work he had ordered a couple of months ago.
So, tomorrow, there’s a walk-in dermatology clinic at this facility, so I’ll do that and see if they can get a biopsy on one of my toes. Crazy, my toes were so unbelievably inflamed for five months, and now, the ends are “just” dark blue/purplish with scaly ends. Hopefully, there’s something they can scrape for a current “reading.”
And, Dr. Oliviera is scheduling me for a biopsy to be done on an artery in my noggin’. Definitely unfortunate that they only do these biopsies on Mondays and Tuesdays, so that means another drive up here this coming week. (I watched a YouTube video of the biopsy—UGH !—as if my hair loss isn’t enough—they shave a part of your head—and use a local anesthesia.) AND, this very large clinic only does ANA lab work on Tuesdays, so that won’t be done until then. In the meantime, he’s starting me on prednisone, which I had told myself I wanted to stay away from—I recall the days when my mother had been on it for so long with all of her lupus complications. . . .
Joie and AubreyBear, thank you SO much for your good wishes! I so, so appreciate you. Also, Joie, I drove up Tuesday evening so I didn’t feel rushed with my appointment today—and I’ll leave tomorrow after I see a dermatologist. It’s “only” 180 miles from my front door to Billings Clinic. Again, nothing like Laura had to drive! My feet and legs started to act up on the drive, with the tingling/numbness, but I pulled over, took my sneakers off, set cruise control, and was able to move my feet around a bit. That was better! ;)
Oh, I mentioned to the doctor that I had so many other problems—and my previous ANA panel and “discovery” of MCTD, but he wants the titer value, which I understand and want myself, and he said it would be great if everything could fit under one umbrella, but it doesn’t work that way. He did inform me that the blindness that can result from Temporal Arteritis is not reversible, which I already knew, but just nodded my head.
I had made him a nice folder with my current meds, history, and all the symptoms I could think of, starting from my head down to my toes—along with the pics I had taken. Guess I was hoping for the overall Fix-It Man—I’m your most important patient--all in a day’s work—but that’s not the way it goes. I wish I would’ve been a bit more of an advocate for myself, but with age, patience has become a virtue with which I am familiar, as well as choosing when to fight a particular battle.
“Courage doesn't always roar.
Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.'"
- Mary Anne Radmacher