Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Are the symptoms the same when it runs in the fam?

I know that everyone is different and that we all have different pains associated with AS. What I was wondering is if it is that different when it runs in the family, or does it tend to follow the same path? In other words, if you have family members with AS also, do you find that your AS complaints and theirs are similar?
Trace

Hi Trace

Both my Father and younger Brother have AS.. But with the 3 of us it acts differently .. According to my Mother I seem to have it worse then the other 2..Right now they seem to have small flares but I am in pain everyday ..

Trace,

I'm not sure how other people go, but mine is a little different. I don't know of my grandfather's symptoms. I believe he is AS, but fused now. I don't want to upset or confuse him by talking about it. He's had it so long and knowing it's AS won't change anything at this point.

My mom has some similar pains, but not as severe. I'm the only one in my family that has found out I have AS symptoms. While I acknowledge that my mom had pain and did suffer some with AS, I definitely think mine is more severe, and so does she. Mom was in a lot of a pain, and she has been able to offer support and insight. However, I sometimes feel a little like I would die if I didn't have medicine to decrease my pain.

My symptoms are similar enough to my mom for us to understand eachother's feelings. However I don't think that the course is the same with us.

Aly

Hi Trace

Not sure who I get my AS from. My sister has RA and Lupus and father had RA and other arthritis(s). My two sons, both have AS symptoms, and I tested positive for the gene HLA B27+.

My youngest son had problems with his ankles, as did I very young in age. Both boys have hip problems. My oldest son and I have back problems.

Hugs

Gerri

Hi Sweetie,

I have had AS for 17 years now with we thought coming from no where, BUT my precious Dad who just turned 73 is having alot of problems like me now with pains in his back and knees ect...

My children Tiffany 25, Tori 14 & Ethan 10 have all in the past had problems and are showing signs I think.

Tiffany, when she was pregnant with with our grandson Jack had alot of problems with her SI joint, luckily after giving birth things seemed to have quieted down.

Tori seems to always have problems with her ankles and back. She can not run or play in any sports because of her ankles. She has already broke her ankle once and has strained or pulled tendons and ligaments several times...she stays in pain alot. Our ped has given her an open script for 800mg Ibuprofin.

Ethan our little Prince also has problems with his ankles, back and legs. So far we just do Ibuprofin but a couple of times we have had to do steroids with the kids. They are very limited in small doses but you would not believe the difference they make..it breaks my heart!

We have another daughter Rachel 23 but she is Bill's daughter so she has no chance of inheriting this stupid disease from me thank God.

I hope to goodness that your kids are not having problems.

I hope maybe this has helped at least a little bit.

Let me know if you have any other questions or just pm ANYTIME.

Hugs,

Lisa

Sorry, I am so far the only one with AS that we know of in our family; but I am also HLB-27 negative. I don't know if you are familiar with the SAA (Spondylitis Association of America) but they also have a website that has a ton of info that may address this.
I also live in AZ. Where are you? I am in Sierra Vista.

Interesting question. I think gender is a bigger issue. My Mom has AS and her Mom had it too. My grandmother was a smoker so it took its toll worse on her but it manifested more in hip pain.

My mother had more stomach woes but very similar hip pains.


Mine is more widespread and lead to complete fusion everywhere and seems in many ways not that similar to the way AS presented in both my mother and grandmother.

Hi Trace - I have 2 uncles and an Aunt who passed with AS. 2 Uncles with AS now and my mom with AS. I have a cousin and myself with AS along with 2 neices with AS. There are more of us with it in the family but we are all just starting to discover our individual issues with this disease as my parents generation chose to deny/ignore/not talk about this disease with their children.

The common thread seems to be some form of fusing of the neck and spine, Fibro, RA. Pain, stiffness, chest expansion issues, heart problems.

The differences that I noticed are I think from dicisions made on each individuals choices on their course of treatment. Most family members chose to ignore it and let it run it's course and treat it like an arthritis issue and look no further. Some family members have gone the route of following their doctors advise because they are more educated and took infusions and powerful high tech drugs. Some family members have taken the self healing approach with vitamins and supplements and eating/lifestyle changes.

I have seen this disease take loved ones and if you want me to be brutally honest I have seen that the family members that took the self healing approach with vitamins and supplements and eating/lifestyle changes have faired far better than the ones who relied on the medications and high tech drugs or simply chose to ignore it. There always seems to be a price to pay with side effects to many of the medications and I have seen often times other more severe problems are caused by the medications that are supposed to help you. I don't want to give morbid details to try to sway anyone one way or another regarding their choice of treatment because we all have the right to choose what we feel is best for us. My choice is to try to keep this disease at bay with diet and exercise because it has been shown to be a very viable option and I have seen this disease played out many times. I have said this before - it amazes me how many different faces this disease has. For a doctor to hear all the symptoms and not know anything about the patients connection to AS it would almost seem impossible to have so many varying issues. I had one neurologist tell me when I told him of my symptoms...you can't have them all - let's start with one.

I hope this helps in your question...Sue!

Thanks for the info, Valerie. I sure hope your pain subsides.
Trace

Aly - Thanks for the info. My mom said her dad always complained of back pains, and my mom complained of back pains very similar to mine. She ended up with Pulmonary Fibrosis, which I now know is linked to AS. So, I'm assuming she had AS. I didn't get my DX until after she passed on.
-- Your info helps. Thanks.