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Son newly diagnosed #2456 01/17/05 10:22 PM
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Hi, After 2 1/2 years of taking my teen to various doctors, he has been diagnosed with AS. I've done much research in that time and agree he probably has AS. However, I have questions that the docs just don't seem to answer so I thought maybe some of you could tell me if his symptoms are characteristic of AS. In addition to the hip and spine pain that comes and goes, he has muscle aches that move around. This week it is chest that hurts - pressure, like someone is sitting on it; another time it'll be his upper arm muscle that aches for weeks, or a thigh muscle. This is pain that keeps him up at night and prevents him from walking. Additionally, he continually has something similar to an arrythmia. You can see and feel a rapid beating of a sort in his chest or in a vessel along side his heart. The cardiologist has run tests and sees nothing wrong with his heart. Even the monitor he wore came up with nothing. But the rapid beating continues. Do these symptoms sound familiar to anyone? Thank you so much.
A Mom

Re: Son newly diagnosed #2457 01/18/05 02:20 AM
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mamadi Offline
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Hi Mom,
Yes they sound very familiar to me. I just had a bout of the heaviness in the chest this past week. If you touch the breast bone it hurts. To take a deep breath hurts. eek Also the pain in the muscles can be referred pain. Were the pain in really in the joint or ligaments and is causing the muscles to hurt. I have this in my left shoulder. It can cause pain down my arm to almost my elbow. Below is a link to help with more information. Please feel free to ask any question you might have. We have a wealth of information on this board and willing to share it.

Sorry to hear you son has this awful disease. The good new (if you can call it that ) Is that now you know what it is you can treat it and hopefully prevent any damage to his spine and other joints. I wish I had known when I first had symptoms. mad Maybe then I could have stopped my neck from fusing.

http://www.spondylitis.org/about/complications.aspx


MamaDi

Take One Day At A Time and Leave The Rest Up to God.
Dxed with AS, Ulcerative Colitis, Fused C2-C7, Bi-lateral SI joint fusion.
Meds are: Humira, Imuran, Lialda, Skelaxin (during the day), Flexeril (at night), and Narco, Tramadol.

Re: Son newly diagnosed #2458 01/18/05 04:04 PM
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Hello Mom A,

Also, here is an article on Juvenile Spondyloarthritis (Juvenile AS is a part of this disease group):

Juvenile Spondyloarthritis

Just to note, we are currently updating our Juvenile Spondyloarthritis section and will be relaunching it shortly.

Best,

Chris

Re: Son newly diagnosed #2459 01/18/05 05:05 PM
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Wow... Why is it I'm always so amazed at the outpouring of support and free flow of information on this board?!?!

It's soooooo reassuring to know that there are others out here who I identify with!

Mom - I know it's hard to wrap your brain around all the information.. but if your log-on is any indication, you are the best cheerleader your son could ever wish for! Keep up the great work, Mom. Be strong and remember that all your hard work to educate yourself (and maybe even teach the docs a thing or two!) WILL pay off. You have the opportunity to arrest the AS for your son, and some day he will thank you for loving him as much as you do!

All the best,
Colleen


Re: Son newly diagnosed #2460 01/18/05 05:30 PM
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ONe question, has your son been seen by a BOARD CERTIFIED PEDIATRIC RHEUMATOLOGIST. This is critically important for a correct diagnosis. My son is 16 1/2 and was diagnosed at 12 with spondyloarthropathy and my daughter who is 18 was diagosed at 16 with the same thing. While this is not the same thing as AS, it is similar. If you would like to e-mail me, it is rabbjbmom@aol.com.

Re: Son newly diagnosed #2461 01/18/05 10:02 PM
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katikat Offline
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I have been having pain in my upper right arm for several weeks. I thought it was muscle problem. So this could be refered pain from a joint?


Re: Son newly diagnosed #2462 01/18/05 10:52 PM
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My teenage son (14) was diagnosed almost a year ago. We also searched for over 2 years. His symptoms are sometimes not as clear as other people with spondylitis (he has a lot of stomach trouble). He does have the type of chest pains you describe often, especially toward the end of a flare-up. He also has a lot of aches and pains that move around, in fact until recently his back was the least of his complaints. We are really excited because he has been on sulfasalazine since September and hasn't had a major flare-up since (he was having down and out bouts every few months). It's still early but we're hopeful. Now that you have a diagnosis, I hope your son will improve. Although it's not anything you would choose for him, knowing what it is and how to treat it can be a big help.

Re: Son newly diagnosed #2463 01/19/05 02:56 AM
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Wow, this is great! I feel I'm getting more information here than from the docs, who have basically told me nothing. He was diagnosed because of his x-rays taken a year apart that indicate something is going on in the hip/spine area. I still have questions and doubts and think that possibly something else might be going on in addition to AS. The reason for that thinking is that I don't yet know on the symptoms and side effects of AS. My son's pain varies. He's had two really bad flare's in his hips, where he couldn't walk at all. Luckily, it didn't last more than about 12+ hours before subsiding. His original pain was in, what he described, as his tailbone area. But most of his pain has been in arm muscles, leg muscles, neck and shoulder and chest. He especially has had problems with sneezing. The pain is excrutiating and travels down his arm. This sneeze problem comes and goes, usually lasting about 2 weeks at a time. Does anyone out there experience this? The doctors are puzzled. He's been completely checked out by a cardiologist and his heart is fine. The second puzzling symptom is the rapid pulsating beat in a vessel in his chest. Has anyone experienced this? It doesn't hurt; it's just scarey. We've seen 3 pediatric Rheumatologists. The first said he had no diagnosis and to take tylenol. The second saw him about 4 times and said I really didn't need a diagnosis - just continue to take tylenol. Finally, a doctor at Stanford took another x-ray and diagnosed him with AS and is treating with anti inflamatory, which doesn't seem to help too much. No symptoms this week - that's a good thing. Thank you all for responding, the websites you shared and your support. I'm short on time during the week, but will post whenever possible on weekends. Thanks again.

Re: Son newly diagnosed #2464 01/19/05 11:41 AM
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rabbjbmom Offline
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One thing about antiinflammatories, they take a while to build up to full strength and so you don't see quick results. The other thing about them is not every one works for every person so its a trial and error system to try and find the right one for each individual. Good luck.

Re: Son newly diagnosed #2465 01/19/05 06:11 PM
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Ryan's mom Offline
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I haven't posted in quite some time, but I'm sorry about what your son is facing. My son turned 17 on Sunday and was diagnosed at 15. It's definitely something we work with daily, but it's hard ... I was diagnosed a little over a year ago and feel terribly responsible for what Ryan's facing. This is going to be lengthy ... sorry ... Ryan had a paratonsilar and pharangeal abcess (filled with hymophillis) when he was 3 ... he almost died. At 12, he was diagnosed with disseminated histoplasmosis; in July 2003, he was diagnosed with AS; in October he was hospitalized with aceptic meningitis ... the neurologist who stepped in during his hospitalization wanted to do a recheck last week ... he's the first doctor who has said let's step back and look at this collectively ... he thinks they're all related and is sending Ryan to an Immunologist in St. Louis on February 1 ... I'm scared. He feels that Ryan could have a very rough road ahead of him considering his past ... I'm scared. I sit hear with tears in my eyes ... I'm so sorry for all of you who have children dealing with health issues. Ryan has never asked why ... he's tough, but between us moms, I'm just not sure where to turn. Lots and lots of prayers ... to "Mom Advocate" ... if your son would like to contact Ryan, just e-mail me; I'll pass on his email address. The kids need to be able to connect. Thanks for listening, I just had to get this out there to see what anyone else might think ... God bless you all ...

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