Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hi...new here with lots to say!

I want to first thank all the people here that have helped verify my realities, and the doctor that finally defined my AS! I had been having pain in my hip & groin area for over a yr. My OB GYN thoroughly checked me out... premenopausal. My PC doc said "degenerative issues". I knew of a bulging disc in my lower back, had a cervical disc fusion (neck) in 1990 (at the perfectly healthy, ripe age of 28). The hip that they took the bone plug from has always given me extra issues, & haven't been able to wear heels since. Knees have given me problems off & on through the yrs.

I fell in February, and that "woke up" ailments I hadn't had, amplified those I had times ten and both arms are numbing out. My primary dr did xrays, determined no acute fractures and again said it was an age/degenerative arthritis thing. He recommended I see a rheumatologist.

I took his advice and found one with good reviews. He was very interested in my skin & nails, which are okay, but I found odd. I had no idea, nor would I ever dream skin conditions can me signs of, or be a precursor, of certain forms of arthritis. He also basically said thyroid issues can mimic arthritis. Who knew? He sent me down for labs & a pelvis xray...the one xray I hadn't had, and my hip(s) are really the most painful & troublesome. They drew 7 vials of blood, which kind of alarmed me! One was a thorough thyroid check, the others were a rheumatoid test, something to do with Fibro (which I was diagnosed with about 5 yrs ago & now question if I was misdiagnosed)& a few others I couldn't identify.

My follow up isn't till Wed, but the doc did send me my lab results and briefly went over them with me on the phone. My HPLA-B27 test was high. After researching on my own, and reading everyone's posts here, all my problems over the yrs are now explained. It's like a puzzle coming together. There's the Fibro, IBS, a spell of eczema, one eye that streamed ALL the time (until I started taking the anti-inflammatory he prescribed), the neck surgery with no "reason", various joint & back issues, the fact that my leg pain worse when I'm constipated (that one really made me question if I was crazy) and my inability to sit, stand or move for any length of time.

I'm scared of the future, but so grateful that I have an explanation for everything! I'm also thankful to have found this forum...the bravery I've read of makes me hopeful I too can "KickAS"!!

Thanks for having me!
Leslie

Haha I like the irony for your first post: here is Lessismore with lots to say!

You're not alone in a meandering path towards eventual AS diagnosis, seems to be a fairly common theme.

P.S. another reason I like your nick probably won't make sense to you, but I like to remind old unix users that "'less' is 'more'" on Linux (program named 'less' is an improved replacement for 'more'...)

Me too! Aint been quite diagnosed for AS yet but i got told I was HLA-B27 positive last week so it's a start. It's a good feeling knowing there's an explanation.

first, a quick hello and welcome!

second, yep, now i realize that constipation is my body trying to tell me its going into a flare! took me some time to connect those dots as well!

third, your last paragraph regarding the future, reminded me of what i tell people arond me when they comment that i seem better: "i'm not really better, worse in fact, but i have better doctors and better treatments now, and thus do feel better much of the time."

Welcome Leslie from Texas,

I am a Kansas girl at heart. I am so glad that you found this great site. You will find lots of info and lots of friends. This is a family that you get to pick with all of us suffering at different levels so don't be frightened by some of us that well into our years of this.

You have the biggest part of the puzzle finally figured out and a Dr. to help. That is immeasurable! Lot's of new med's, diets, and excercises available now that weren't out when I was first diagnosed. I have Fibro as well as do some others on here. Don't count it out please. I tried to for years until several Dr.s told me that I was doing my A.S. a bad disservice by not addressing the fibro because they aggravate each other and in time you will be able to differentiate which is which. If you have questions for any of, please ask or send a private message.

An important thing that I have found is to keep all of your records. Ask for them and keep all tests, reports and especially the labs. You will be needing them for all the team you will probably have ensembled by the end and faxing them saves a lot of time if you yourself have them. We are all here to help you and I myself have learned a lot from each new member who comes on here. Welcome!

Hi Leslie!

Welcome to KA!!!

I am so glad you found us. This site is a wealth of information. You will also find a lot of support here.

Craig

Thank you so much for the warm welcomes & encouraging words! My apologies for the delayed response. I get on here read some posts, then my time is up in this chair & gotta move. AS is frustrating to say the least!

You ARE right...this site IS a wealth of info! I have read several instances where AS appeared after some kind of fall or accident. Evidently this is fairly common? I had creaky days, before I fell in Feb, but now it's times 10 CONSTANT. There are bad days & really bad days. They've ruled out any fractures, thankfully. Wish me luck...I go to an ortho tomorrow, to determine what bulging discs are old & what are new, and to the rheumatologist for my follow up. Should be an informative day!

Do any kind of Cortisone shots help...or any other site injections?

Time to move & thanx again y'all!
Leslie

Hello Leslie,

Glad you found us, great place for those battling arthritis/AS.

Take one day at a time, makes it a bit easier. Much can be very scarey about living with chronic disease... but Kickas is always here.

Where is Garland, TX... close to San Antonio? I stayed in city NW of San Antonio when moved from Florida to Arizona... Garland sounds familiar.... but that was 10+ years ago now.

Take care,

Tim

Thank you! Garland is a burb of Dallas...just east of it.

Leslie,
I have had steroid injections before for diagnostic measures before having Rhizotomies done. They really help, especially in the lumbar region. Rhizotomies are also known as Radio Frequency Ablation.