RE: MICHELE T

[Guest guest]

Hi Beth - thanks for asking about Mr. ! He is doing really well. He is

off all of his heart meds and unless you see his chest, you would never guess he

was a heart patient. He is running around and really smart. Can you tell I'm a

bit partial? LOL

Sorry Hannah is having some issues. I know and I have often thought Chris

and Rob were similar. was diagnosed at 13 after he had ankle pain. We went

the orthopedic route first as we thought he had some sort of injury. He saw two

different drs over the course of about 7 months. The pain never fully went away

and then finally arthritis was mentioned. Went to the ped rheumy in Oct 2000 and

he was diagnosed at that first visit. The spondy diagnosis came along after he

had begun complaining of pain in his hips. The rheumy found inflammation not in

his hips but in his pelvic rim/lower back area. At that time he could not bend

over and touch his toes. That is a test they do which actually has a name I

never remember. They measure the distance on the back. Anyway, over the years he

has had issues with his hands, toes, and knees in addition to the ankle area

(more Achilles tendon) and back. He definitely has issues with his tendons.

was given the diagnosis of spondylitis or spondyloarthropy. He really

seems more to fit what is called undifferentiated spondyloarthropy. The rheumy

tested him for the marker HLAB 27 and he is negative.

Working with PT helped a lot. He was able to move much better after and

learned some good tips that he has used over the years.

Hope this info helps you, let me know if you have any other questions. Let us

know how Hannah is doing. Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

Beth Yohnk

Sent: Thursday, April 07, 2011 4:36 PM

Subject: MICHELE T

Hi Michele:

It's been a while since I've posted because Hannah has been so stable. However,

she has some new symptoms that are appearing and we are trying to figure things

out. Can you remind me again how was diagnosed?

In chatting with , Hannah seem to have some symptoms similar to what Rob

was like at her age. I remember also being similar. Hannah is seeing an

orthopedic specialist (this is 100% unrelated to her foot fracture from last

Oct) to rule anything obvious out. She is also doing PT with an amazing

therapist who is very concerned with her knee/foot/hip on her right side.

Thanks, hope all is well. How is that grand baby!!

Beth & Hannah, 14, not sure what she has anymore

" We cannot control the wind, but we can adjust our sails "