Thursday, May 14, 2009

Brandt Disease

"I know we joked about it before, but I'm afraid it might just be true that you have Brandt Disease," my rheumatologist said while examining the weird rash-type thing on my knee.

"Is that a variant of Lupus?" his resident/intern asked.

"Sometimes we just have to admit that we don't know all there is about the human body. There are diseases out there that we haven't yet identified," he explained to her (and me), after I'd reminded her of my last name and that he was referring to a disease named after me.


I'm sorry it's been so long since my last update. I'm still coping with a sinus infection left over from the cold/flu bug I succumbed to two weeks ago. Sigh. I'm not sure if that's the reason I'm feeling as low (or lower) in energy than before the infusions, or if they just haven't kicked in yet.

I went in for my follow-up bloodwork on Monday, and I see the hematologist on May 18 (next Monday) to find out how I did and what he thinks of those ganglioside antibodies that I tested positive for earlier.

Meanwhile, my internist thinks she knows why I've had chronic ferritin deficiencies, and after talking to my OB, I'm scheduled for a D&C and endometrial ablation on June 4. The D&C will remove the three uterine polyps found on a sonohysterogram in March, and the ablation will essentially remove my endometrial lining to my uterus. Without the ablation, the OB says the polyps will almost certainly return within a couple years. And since we long ago decided the chronic back pain from my 2006 car accident (which may or may not have been responsible for the miscarriage I had two days later) meant the end of our hope of having a second child, the fact that the ablation makes it dangerous if not impossible to have more kids is not a problem.

I was actually scheduled to have this procedure back in March 2007. It got postponed originally because I came down with pneumonia. It was rescheduled for June 2007 and rescheduled again because of my second case of pneumonia. And I canceled it from my hospital bed in July 2007, when it became apparent I wasn't going to be healthy enough in the immediate future.

There's a small part of me that keeps thinking that this is the cause of my medical mystery since this was when my body started acting wonky. I've been assured by multiple docs that it's just not possible that it could be responsible for my wide variety of symptoms, but I'm not sure I'll completely believe that until it's done.


Miss Waxie aka A Comic Life, Indeed said...

Oh dear. I do know how you feel about having your own disease and the enormity of fear, confusion, and pure frustration that comes along with it.

And I really hope these new tests give you either answers or piece of mind - I SOOOO know what you mean about having feels about a certain thing in how it relates to your body, even though doctors say it can't be so. (in my experience, I'm usually right!)

As for Brandt Disease. Patten it. And then, when it actually becomes the name for what you've got, charge every bad doctor you've ever seen any time they want to use it!! ; )

- Miss Waxie

Aviva said...

I needed that chuckle today -- thanks so much for it! I *love* the idea of getting paid by bad doctors every time they diagnose someone with "my" disease. :)

Thanks, Miss Waxie, for brightening my day. :)

Just Jenn said...

Only one way to find out then... hope it goes smoothly when you finally have it done.