Kickas.org Forums Ankylosing Spondylitis General Discussion Friends and Family Support Group Hubby just diagnosed with AS... help.

My husband has been in pain off and on as long as I have known him (11 years). He has had issues with inflimation of the iris a few times and was tested for a certain gene which he has. He finally went to the doctor yesterday to find out what is sausing the pain. They think it is AS. We are so new to this and what I read on line makes it sound horrible. What is in our future? Will this one day be debilitating? He is starting PT today. Any insight would be wonderful. Thank you!

Hi Renee! AS is individualized so the future is unknown. We can go from mild to severe or vice versa. We all follow our own path. Has your husband undergone any SI joint x-rays? That can show the level of current damage (assuming he has SI joint involvement). It can be disabling but it doesn't have to be. I read an article once that said that most people (around 85%) with AS will work a full career (with restrictions). Not professional athletes or anything. There is a lot of new research going on now so the future has hope. But it is definitely still scary. I was diagnosed in 1998. My eleventh anniversary.

Craig

Craig

He had x-rays yesterday but I'm not sure what kind. They didn't explain much to him and his diagnosis is less than 24 hours old. He has a desk job as a Mechanical Engineer but loves working on and under cars in the evenings. (closet grease munkey) I hope it won't interfere with his hobby and playing with our young kids. Should we get our boys tested for the gene? I worry about them now too.

Hi Renee,
This has been a wonderful site for me! I found the No Starch Diet and I went from being crippled at 28-needing a cane to pain free most days-it stops the damage,too! There are different sections on this site. Some don't do the diet-they choose the meds-so just look around the site at different treatment options. There are all different types of meds, too.Good luck in whatever you choose!
Shauna

Hi Renee and welcome to KA!

I am sorry to hear that your husband has been diagnosed with AS. With AS the prognosis is difficult to determine as it can progress very differently in everyone. Being HLA B27 positive and having iritis (which affects around 33% of us) can 'suggest' a more difficult course ahead especially for folks with early onset, but both treatments and research have advanced considerably over the last decade, so there is hope and reason for optimism too.

I would not worry about having your kids tested for the gene and most docs will advise against this, unless at some point they appear to develop symptoms. As I understand it, there is a 50% chance that they may have inherited the genetic susceptibility but then only a 20% chance that something may trigger the disease = so an overall 10% chance of getting it but a big 90% of avoiding it altogether... so the odds are definitely in their favour!

I have had AS for 29 yrs since I was 18 y/o (with chronic iritis for 10 yrs and some fusion also) but if you met me, you'd never know it, well not unless you spent a lot of time around me.

It is a difficult thing to wrap your mind around the diagnosis of a chronic illness but just try to take things one day at a time for now and to learn as much as you can in order to be proactive in your healthcare choices. I hope this site will be a great help and source of support for you both!

Take good care,
mig

Renee,
Hi and welcome!
Encourage your husband to read material from this site. I am not No Starch Diet, but I bleive many are in remission from not eating starch. I seem to fail at the diet. I am male, 60 years old, I have beenin pain every day since 1963. It is a stinking terible disease, but I am active, I hunt and fish and play with the kids.
Tell your hubby to do all he can do. Avoid as many drugs for now as he can avoid.
Have him contact one of the young guys here for more info!
I have been here a long time and love it here!

You could get your sons tested for HLA-B27 but I don't know if that will mean too much yet. You just have to watch for symptoms. I don't have the gene but I have the disease. Children have a 20% chance of contracting the disease if a parent has it. It might affect his hobby. Everyone is different. I would have a hard time. Watch for inflexibility/stiffness/fatigue/low back pain/SI joint pain in your sons. It usually starts around 15 to 25. I don't know how old your sons are but hopefully the disease won't be around in the future. Only a matter of time.

Exercise is really important too, "move it or fuse it" is one of the banners on this site. There are other things too, like really guard your posture by sitting up straight and also sleep flat on your back with no pillow to avoid the kyphosis(stooped posture). I'm not sure if it is 100% avoidable, but it is advice I have taken to heart. This site has saved my sanity many times over. There are really good people here and we all have AS. That is powerful.

Good luck. Study all you can. My diagnosis day went alot like your hubby's. Why can't Dr.s tell it to you straight?? What did people do before the internet??

p.s. Lon, you don't look a day over 28!! Surely you're pulling my leg!!

Ok. I am totally frustrated with my husband. Unfortunately, they didn't give him a FIRM diagnosis so he is doubting he has AS but I am convinced. He has pain in one buttox that shoots down the leg. He has for years had pain when getting up in the morning. We always thought it was our bed. He has had 2-3 iris inflimations which needed treatment. He is sensitive to the sun light even on cloudy days. I asked why he thinks he doesn't have it and he says his spine does not hurt and he doesn't have a disease. His pt yesterday also gave doubt with the comment that it seems only to be inflamation around the SI and therefore may not be AS. I personally think he is in denial. I want answers so we can treat and slow down whatever he is going through before it gets worse. I know you all aren't docs but are experts in a very personal way. Does AS seem like a misdiagnisis to you? Could he have all those symptoms and NOT have AS?

Farinelli- My boys are 4 yrs. and 8 weeks. I am still very much in protective mommy mode after just having a baby. I take comfort in knowing time and odds are on their side.

Thanks to you all for all the support and advice and words of hope.

I don't think your PT has any idea what he is talking about. The SI joint is the epicenter for AS in most people. However, you can still have AS without SI joint pain or back pain. Some of us have AS in peripheral joints only. The spine is usually affected though. If your husband has SI joint inflammation, stiffness in the mornings and iritis then I think it is pretty clear that he has AS. If he has degenerative changes on his SI joint x-ray then I think it would be a slam dunk. I think your sons are in a good position due to their young age. AS can show up before 15 for sure. We have members whose symptoms have show up by 3 but that is rare. It started for me at 21. They have learned so much about autoimmune disorders after mapping the human genome. They have idenitified the genes that control them. Now they have to find ways to turn them off.

Craig