Ankylosing Spondylitis

[dreamshark]

With the help of a pediatrician friend, I think I've finally figured out what's wrong with Richard's back and hips, and more recently, ribcage. It's Ankylosing Spondylitis. I knew it was out there on the Internet somewhere, but I didn't know the right medical terminology to track it down.

We're both kind of excited about it. It's familial, it's degenerative, and there's no cure, so you could look on this as depressing news. But we already knew it was familial and degenerative, so having a name and some possible treatments is a step forward.

L thinks that any competent rheumatologist should recognize this if we present the symptoms in the right order. That has been my experience with doctors over the years -- once you diagnose yourself, get to the proper specialist, and describe the symptoms in the order they are presented in the medical texts, they can be helpful.
Before that, almost never.

Comments

[lsanderson.livejournal.com]

There's a PBS special on it, and I thought it was famous for being hard to diagnose...

[dreamshark.livejournal.com]

There's a PBS special on Ankylosing Spondylitis?

You've actually heard of Ankylosing Spondylitis? From the PBS special, or someplace else?

"Famous for being hard to diagnose," huh? Sounds like a contradiction in terms. You'd think that being famous for being hard to diagnose would make something a lot easier to diagnose (being famous and all).

It...

[lsanderson.livejournal.com]

It begins as a diffuse set of symptoms, and is often thought to be psychological from what I remember.

[cakmpls.livejournal.com]

That has been my experience with doctors over the years -- once you diagnose yourself, get to the proper specialist, and describe the symptoms in the order they are presented in the medical texts, they can be helpful.
Before that, almost never.

We've had mixed experience. But one minor one that goes along with yours: The Babe came from Korea with a diagnosis of Erb's palsy in her right arm. Erb's palsy almost always comes from an injury to the brachial plexus during vaginal delivery. ("The brachial plexus is a network of nerves formed by fibers which are located between the shoulder and the neck. Ninety percent of brachial plexus injuries in children are caused by a traumatic stretching of the plexus during birth." http://www.bcm.tmc.edu/pednsurg/disorder/brachial.htm)
But R was delivered by C-section, so this diagnosis never made any sense to me. The doctors just shrugged it off: "Yeah, that's strange."

Some time ago I noticed a small scar right at the juncture of her neck and shoulder. She arrived in our family at 16 months and never had any injury here that would account for the scar. My theory was that she had been cut by a scalpel during the C-section, and that was what caused the nerve damage. Now both our family physician and the arm-and-hand surgeon have said, "By golly, I'll bet you're right." Well, duh.

And it was the social worker who first identified E's condition as arthrogryposis multiplex congenita; the physician in Korea and the neurologist we took her to when she arrived here both said it was cerebral palsy.

[kalmn.livejournal.com]

i quite like my rheumatologist and her practice. dr. jody hargrove, consultants in arthritis and rheumatology (or possibly arthritis and rheumatology consultants; they changed it from one to the other and i can't remember which is current.)

952-593-1959. i don't know if dr. hargrove is taking new patients, but pretty much everyone in the practice ends up in the twin cities magazine best docs issue every year.

[minnehaha.livejournal.com]

He's lost a lot of mobility in the last few years, so getting some of that back, or at least not losing more, would be very very good.

K.

[skylarker.livejournal.com]

I didn't realize that Richard's stiffness had such a serious cause. I'm glad to learn that there are some things he can do that will help ameliorate the symptoms.