Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group medical mysteries

Hey did anyone see the TLC channels show medical mysteries on Tuesday night?
It had a young women on it that ended up being diagnosed with Undifferentiated AS...
one strange symptom that she had were patchy sores on her scalp . anyone else have that?
did any one see the show?

that's the show that started me on my quest this year.
i saw it around christmas time.
i don't have the scalp problem but i know others here have mentioned that they do.
i "just" have the SI problem and the tendon issues.

i'll pull up old posts about the show and about the scalp (if i can find the second, the first will be easy to find, i think i was the one that brought it up 6-9 months ago)

it was a good show and it set me on my new quest to get diagnosed and brouught me here, for that reason alone, it was a good show for me.

i love the show in general, regardless of the disease.
kind of scary that my husband and i can diagnose a lot of the GI and autoimmune stuff....so why am i still such a medical mystery????

sue

it was strange .. I never watch the show but was surfing and
as I was watching it I knew what she had because it sounded so similar to my daughters symptoms (except the scalp)
But this girl waited so long to get help that her elbow had frozen.
my daughters ankles have very limited range of motion .
The ortho was sure that she had tarsal coalition.(she did not obviously )

I watched that show the last time it was on. I had sores on the scalp for years but never thought much about them until seeing the show. The places on the scalp would come and go but never bothered me unless I touched them.

I recorded the showed onto dvd then converted the video file on my computer so I could upload it to my live page. I'll have to look for the link so if anyone else wants to watch it they can.

Brent

Thank you .
Were the sores on your scalp itchy? or just sore?
ps cute dog

sorry, i can't find the links, but that's ok, not sure we said anything profound back then.

sue

Hello true, I've never seen the show but I think I might have the scalp thing. I also have dandruff so I never gave it much thought. I'll get what seem like white scabs which do itch and I have a bad habit of scraping them off. They occasionally develop into actual scabs as a result.
On very rare occasions a similar thing happens on my chin. I used to have a beard and this thing would happen back then as well. Since I stopped shaving, it will still occur from time to time anyway.
In the hairline, I really could care less, on my face it creeps me out. It's one of those things I'll mention to my doctor when I get a grip on all the other crap that seems way more serious. Last thing I need is another prescription.
I've wondered if it's psoriasis since I keep reading about it when I'm looking up stuff on AS? I've known a few people with psoriasis and although it looks just like it, those people seemed to have it on their elbows, knees, etc.
Bottom line is I have no idea but patchy sores on the scalp is something I've seen.

I just read over my post and this sounds disgusting! LOL, it's a pretty rare thing and only ever bothered me when it showed up on my face...I'm not a monster, really.

I have what you describe - my doctor tells me it's psoriasis, and it's only on my scalp and very occasionally if I am extra stressed, it appears on my heels! I can get some control with T-Gel shampoo, and luckily it never turns like dandruff, it's just yucky scabby sores that do get itchy, and never seem to heal. Ugh!
Jo

They were not all that itchy until they had been on the scalp for a few weeks to a month. I usually found them while washing or combing my hair. Sometimes I would find new ones by laying my head down on the pillow causing pain from the pressure. The comb hitting one is a real wake up when you are not expecting it if you have thick hair. I still get a few of them but no where as often as I used too.

Sandy said thanks for the compliment. He's my little buddy that keeps me company.

Brent

Here is the link to the video. I had to break it into three parts before it would let me upload the files. You can click on each part then click Download, click Open and it will load to play.

http://cid-eb04841201787b68.skydrive.live.com/browse.aspx/undiffspond