Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club Anyone else happy to hear they have AS?

I put my first post up a few months ago, and finally have an official diagnosis of AS from my new rheumatologist. I'm pretty pumped about it because now I know why I've been in pain for the last 9 years, it also helps because this means I was right so many months ago when I brought AS up to my GP and he more or less ignored the possibility, and being right is probably my favorite thing.

Who else was happy to hear their diagnosis?

And be clear, I'm not happy I have it, I was just happy to know that I have it.

Best,
Aching Comic

Ha, I love the line about being right. So true for me too.

I was very glad to have a name for it, and to begin treatment for it. I'm not glad at all that I have it, but since I do, I'm happy to know what it is!

I too was happy to have an explaination for my pain. No fun having AS, but at least the pain has a name.

Hi Aching Comic! I'm one of the "oldsters" (41) that butts in every now and then. Glad you got your diagnosis! Now on to treatment, right?! I actually cried tears of joy when they gave me a diagnosis! I just kept saying "It has a name!" (No one can pronounce it though!) So many people had treated me like I was crazy, it was such a relief. Welcome to the boards!

Blessings,
Nisey

Hello, Aching Comic. it took several doctors and each had their own theory of what was wrong with my body over the course of three years before I got the official diagnosis of AS. I was devastated when I was given the news that I would have AS for life. on the other hand, I was glad to find out what was really going on. It took awhile for me to accept it, but now I have the proper treatments to hopefully halt the progression of my AS. By the way, I was diagnosed when I was 28 years old. I turned 30 back a few months ago.

Jamie, 30. diagnosed with AS in September 2010. On Remicade once every eight weeks, methotrexate once a week, frolic acid and vitamin B 12 every day.

I can definitely relate. While I was nervous about the prospect of having to live with this disease for the rest of my life, it was nice to finally have a name for all of the pain and suffering. And having a diagnosis meant that there was potential treatment. I was just diagnosed this past November and am still working on the treatment. I am a little less "happy" about my diagnosis these days, as the pain, stiffness, and fatigue have been really difficult to deal with. However, it is still a relief to know what I am battling. I spent so many years not knowing and eventually convincing myself that I must be weak, crazy, etc.

I cried on my walk home from my rheumatologist. Tears of relief, fear and joy. I've been suffering with pain and other symptoms for so long and had various doctors offer no explanations.

I know what you mean.

Biggest problem for me, being newly diagnosed, was how and when to tell friends and family. One friend cried when I told her and I tried to be so upbeat about it. I'm dreading telling my partners mother, she'll probably think I'm damaged goods, never able to give her grandchildren. Joking. Maybe. She really really really wants grandkids.

My boss was actually surprised I came in after my diagnosis. I explained it was neat to have a name and be able to get treatment. He seemed worried. I was just glad.
The week before I got my appointment (I was on the cancelation wait list for 5 months) I was having such a hard time. When I got the appointment I cried in relief because it was a step in the right direction (my dad was already diagnosed with it and another doctor suggested it after an MRI showed some hip bone being swollen). I was happy my husband was with me at the appointment and felt empowered because I could now get support and treatment. I thought I couldn't join this group until I got a diagnosis from a doctor...

I'm another one who was so relieved, and yes, almost happy to have an answer. I had had little symptoms here and there from age 16 and it just got worse and more frequent from there.

It meant most to me because I had seen a rheumy for a year who told me there was no possibility (she refused to test for it, though my grandfather was dx'd 50 years ago!) and she made me feel like I was crazy. I was beginning to think I was since no one was giving me answers. I found my current rheumy after I was fed up with her, and he dx'd me by the 2nd appointment. I had to stop myself from walking into her office and laughing in her face. I just get back at her by telling people to never see her.

One of the Best and worst days of my life.

It was finally nice to hear someone acknowledge that something was indeed wrong. When other doctors say that you're perfectly normal - maybe even exaggerating and seeking attention - it's definitely a bad feeling. I was supposedly fine, so there are no treatments to help me, I lost the support of my family, and self-doubt even set in. I felt so alone and hopeless, and was depressed at the thought of terrible pain being my new normal. Having my rheumy say she could help me seriously changed my attitude! I didn't have to tackle this alone and the strange symptoms I was experiencing were actually real!

After years of all the same BS everyone else with this disease goes through, I was relieved in Feb to finally figure it out with the help of my PCP. Everything made sense. But I had to wait 3 long & anxiety filled months until I could get into see the rheumatologist. When the day came, I was so ready for that appt and get going with treatment. Then, at the appt, she told me she didn't think it was AS. Just some tendonitis. UGH!

2 weeks later I was back to wondering if I was crazy, imagining the pain. Then she called with results of my x-rays and bloodwork she ran "just to rule it out" and said that actually, I did have AS. I was definitely relieved it had a name, though simultaneously frustrated at all the docs that dismissed it - as if it is normal for 20-something year olds to periodically crawl around on the floor due to incredible joint pain!

I can say yes.....I herniated a disk in 09 at work, and after 3 workers comp drs/12 weeks of phys therapy, the orthopedist i saw told me i was faking it, and reported that to my work. Im surprised i wasnt fired. stupid ***** (<--i did that on my own LOL)

took over 2 years and 3 other drs to figure it out.

I was happy to know what was wrong with me. Had symptoms for about 5 years went through 4 doctors before diagnosis. I always knew something was not right with me and no one listened, doctors or family. Now that I know and down because there is no cure and it is still new in the medical world.



I see in your signature everything failed. How to you handle with your AS?

Hi,im newly diagnosed, just like you guys,feel sad that i got this uncureable disease,but yeah happy that i found out whats been goin on with my back for this past 6 years......

I'll give a big YES to that! I was diagnosed 7 weeks ago after 15 doctors; an exhausted medical aid and quite demotivated.
For me, not knowing was the worst.
All the doctors I went to, all picked up that there was something wrong in my left arm, but none could figure out why. One doctor joked, saying that they should hold a medical convention, just for me!
Finally a doctor took pity on me and suggested I see the best rheumatologist in the country- took 4 months to get an appointment, but at least I have something! And when I explain to people why I hurt or why I'm so tired, theres a legit reason behind it and they can start to understand whats going on. They'll never really get to understand what it's like to have this horrible thing, but for the most part, my friends and family have been really supportive and for that I'm very GRATEFUL!

I was very distraught for a while when I was diagnosed, feeling like I'd been robbed of my youth. Like who wants to wake up feeling as if they have rigormortis every day?

But then I realized it gave me a reason to go lift every day. I gained my confidence back. I realized I had a great opponent that I needed to face down. It gave me purpose. Same with Crohn's. Obviously we have ups and downs but I'm glad I have this great challenge.

When things are good, I feel galvanized and I know who I am.

I think it's a double edged sword. On one hand it's good to know and understand ways to maybe slow the disease or manage the symptoms. And also good to know that most symptoms and physical issues are due to the AS (after ruling out other stuff). Plus as Fletcher said it can be a real motivator in terms of pushing one's self to overcome a great challenge.

But on the other hand it definitely changes things and my day to day experiences, goals, and abilities and while I embrace the challenge and am motivated to push to improve myself, it's still a drag sometimes to be in pain.

I chased a dx for about three years. Tossed from one Rheum to another. Was totally dismissed by hosp for special surgery. As far as I am concerned they can go to hell. I started researching my symptoms and found a forum wjere a British guy wrote his exp and it was exactly like me. And he was dismissed. But finally was told he had AS. In looking it up I saw every symptom including toes hurting, which I always found strange and made me think I was going crazy feeling ao poorly with no answers previous to learning about AS. I called referal lines demanding names of rheumies who specialize in AS and found one who takes my crappy ins and that is how I started to get help.

I started Humira 2 weeks ago. Initially reduced pain a lot. But induced dyspnea. We lowered dose and in the middle of the night I woke from severe ribcage pain. So I am dissapointed and confused. I do notice swelling reduced in neck and head. Hip pain still gone. Any guidance would be appreciated.

Yes,i am thrilled to have a name and chance to feel better. I was tired of being a professional patient!