Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Finally some answers

Well, I went to my family Dr. today and she said that dispite what all the x-rays didn't show and the Rheumatologist's thoughts she is almost postive that I do have this dreaded disease. I am not actually sure how I am feeling about getting this dx, but I am feeling at least a little validated I guess. I am worried, scared that I am going to pass this on to my kids, that I am not going to get to enjoy them the way they are now. Lately, I am in just too much pain to even have a little bit of fun with them. The Dr. gave me a script for prednisone 50mg for 2 days then 25mgs for 4 days and then stop for a month. I have to go back next week to talk to her about whether or not that has helped with the pain and if it does then she wants to do that on a monthly basis. She also recommended that I take Wellbutrin for 3 months because she said that sometimes the prednisone can cause severe depression. I have been feeling a little down, and overwhelmed so maybe it is a good thing for now. I hate to admit that I am not able to handle all of this stuff. I am normally a strong person and right now it is just too much.

Anyways, I am sorry for the longness of this post but I had to get some of this stuff off of my chest. Thanks for listening.
Jill

I understand fully. When I was dx'ed I was happy because I had an answer to my pain and stiffness. But on the other hand I was like [**BLEEP**], I have this horrible disease and pain for the rest of my life. Confused doesn't even begin to explain how I felt. Then came the denial stage, and finally acceptance. I went through major depression and the like. Thankfully the people here at KA and the support of my family and friends and Doctors brought me to where I am today. I have come to realize that life is not over but a new one has just begun for me. I will make do with what is handed to me and make the best of it, and I hope you will do the same.
Scotty...

Hi Jill.
Unfortunately, that seems to be the way it goes to get a diagnosis. I didn't have anything show up on my xrays either, at first. I think I already told you that though - sorry for repeating!
Here's a bit of good news - when I first went on prednisone I managed to get some pretty good feelings of euphoria; never depression on it. And it worked really, really well for me - too bad it's not a good long-term option. If you think you might be on it more than just this once, you might want to talk to your doc about meds to protect your bone density. I made the mistake of not doing that and ended up with bone density loss quite quickly.
I can only imagine how devastating it must feel to think you can pass this on to your kids. I inherited the gene from my mom, and although it's no party to have AS, I can't tell you how grateful I've been to always, always have someone close to me who knows exactly how I feel, and understands me completely. I'm truely thankful for that.
I'm so sorry that things have been so rough for you. Hopefully the wellbutrin and prednisone will give you a chance to get a break from feeling overwhelmed by all this. Hang in there - you ARE strong, and you'll make it through this. Hugs!

Jill, I know how you feel. I have two kids myself, Stephanie is 10 and Nicholas is 8, I recently went through a divorce and my A/S was brought up constantly by my ex who said that I was'nt able to care for the kids due to my condition. It made me angry because for years I worked full time days as an auto mechanic while she worked steady nights as a nurse. While she worked her 12hr shifts I was the one who cared for the children and nomatter how much pain I was in I still managed fine. She also had a habit of rubbing in the fact that I may have passed the A/S on to them knowing that I was already upset about it. Now I'm in my own place and I have the kids twice a week and every second weekend and I enjoy every minute I spend with them. I constantly think about their future and the possibility that they may have this horrible disease and they may even hate me for it. All I can say to you Jill is that you are not alone and we did nothing to deserve this. Enjoy your children and give them all the love you can, it's the love you get back that makes it all worthwile.
Be thankful for what you do have,
Steve

Hi Jill, I understand how you could be scared of passing this onto your children. Before the problems began (pre diagnosis), I thought this would go away on its own and I would be back to normal and my husband and I could finally enjoy marriage together (i started having prob's 4 mths after being married)!!! But, since being diagnosed, I have to put the thought of children out of my mind for now until I can at least control this disease and not be in pain, and it's hard sometimes because all I've wanted since getting married if having a baby! And then, when I finally can get pregnant, I will worry about passing this dreaded disease onto him/her! I guess this is not very encouraging to you, I'm sorry.. but, your thoughts hit home because I relate. So, stay strong and kiss your children because they will be strong for you. Renee

Scotty, thank you so much for the encouragement. I know that I am not alone and this site has truly been a godsend. It's funny how you think if you just get someone in the medical profession to understand what you are feeling then you will feel better. We'll yesterday that wasn't the case. I really wanted her to say yes, you are in pain and yes you are stiff and here are the magic drugs that are going to make it all better, which she did to some degree. And, maybe they will. I just wish that I could take it all back. I don't want to need drugs for the rest of my life. Now I wish she had said that it is mechanical and do some core strengthening and that'll fix it all.

You are right in the respect of needing to change the attitude. I am going to live a long life and I do need to be thankful that we have caught this early enough to not have permanent damage. And I am thankful but also a little poor me-ish right now. It will get better. My family is getting better at understanding what is going on, My husband wasn't as supportive at first but he is getting there. I think that he needed the positive dx to understand and he will get there, I hope.
Thanks again.
Jill

THanks Megan, It helps to hear from people that have had this passed on to them. It says here that 5 in 100 will pass this on to one or both children which doesn't seem like a lot but it is still worrisome. I can understand that it would help to have your mom know what you are going through.

I am hoping that I have the same results with the prednisone that you have had...My dr. already said that if I am doing the Prednisone monthly then she would prescribe something for bone density loss.

Thanks for the encouragement. I know things will get better once I am able to get things somewhat under control.
Jill

Hi Jill, neither of my parents have AS, although both have suffered with things that suggest HLA B27+ (Dad severe psoriasis, Mum 2 boughts of reactive arthritis and iritis) so i don't know who I got the gene from and it hasn't crossed my mind care. I know my parents beat themselves up over "who gave it to me" but i just don't think like that, I seriously have never once blamed my parents, its just luck of the draw. Two perfectly healthy gened people can produce a child with all sorts of problems, the whole gene thing is a game of russian roulette!

I of course worry about passing this on to any child I may have but it won't stop me becoming a parent should my life go down that road (hopefully it will ) but knowing what i do know, I will make sure they are active, have a good wholesome diet etc.

Take care.

I can definitely relate to your ambivalence about the diagnosis. I was quite, quite certain I had an autoimmune disease but I figured it was Lupus. Sometimes I feel glad it isn't, other times, like right now with my shoulder acting up, I wish it were something else.

I worry that the pain is going to be a really tough lot to bear.

But the good news is, you might not have passed the gene onto your kids, if you've only got one copy of it. And even if you did, it might never become active in them.

Very true Sarah. I was adopted so don't know who my birth parents are so it doesn't matter where it came from. And as far as my own children go, if this does get passed on to them at least I will be able to relate and help them get the necessary support.

I thank you for your reply. I have appreciated everyone's support so much here.
Jill