Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How old?

Hi everyone. My name is Angie and I am brand new to the forum. I have posted only here and there. Anyways, it seems like most everyone here is over 25ish or so. I'm only 20. I was wondering when everyone was diagnosed and/or when y'all started showing symptoms. I started showing symptoms at 6 and was officially diagnosed when I was 9. No one else in my family has this condition but I am HBLA27 positive(those letters could be wrong, can't quite remember but I think yall will know what I am talking about lol). I have never met anyone else with this condition and my rheumetologist told me I was the youngest person she has ever treated with AS. I know I am not the youngest person EVER to have AS but I feel so alone sometimes. No one ever knows what I am talking about and it is extremely frustrating. I guess I just wanted to know how other diagnoses have gone and stuff like that. Sorry for the ramble.
- Angie

I was 37 when diagnosed, but had clear symptoms for at least 10 years before being diagnosed. There are things I look back on in childhood that seem like subtle symptoms, so I don't really know when it truly started. Before being diagnosed, I felt so alone and frustrated, not knowing why I could walk one day and not the next, why I couldn't turn my head one day when I seemed fine the day before and didn't do anything to injure my neck. Some people were pretty cruel and treated me like it was a mental thing, that nothing was wrong. Even after the diagnosis it seems like there are a lot of ignorant people who don't understand and don't want to understand who make judgements. That is why it is nice to have this place to come to. I found a local support group last year, but they don't meet very often and now the guy running the meetings quit. Without a new leader we won't have any meetings, but I don't know if I can handle stepping up to fill in and no one else has yet. I hope you find answers and friends here. By the way, my brother spent a couple of years near Omaha, Nebraska. The fireflies are pretty cool, we don't have those out here. We also don't have corn growing everywhere imaginable. My brother also learned about freezing rain out there. We grew up on the coast and he thought freezing rain was a Nebraska term for hail, so he thought no big deal until he fell four times just trying to get from the door to the car and gave up!

hi angie,

there are a lot of people here who have had AS symptoms and pain since childhood and there are some people your age around here who will probably answer you as well.

i didn't have any real troubles at all til at age 30, i developed terrible gastritis, which may or may not be connected. and at age 35, "my body started falling apart". so, i will let others describe their experiences since yours and mine are probably quite different.

welcome,

sue

I was diagnosed at 28 but had symptoms during my teen years. At 49 I have to say I have had my ups and downs over the years having a few flares a year, to going through a five year flare. This current one I'm in started last July and here a year later it is still stretching the limits I can handle.

Brent

Amsher
I know this must be a lot for such a young women such as yourself. I can only imagine what it was like having this as young as 6 or 9. I started showing symptoms when i was 19. It started out as low back pain. Not to bad. i thought that I had done something to hurt it. As time went on I had lower back pain off and on. I would see a chiropractor and he told me at that time that I had a lot of deteriation in my spine for someone my age (around 25) I really didn't think much of it. In my late 20's I started having pain in my hips when I would sit for a period of time. I was a preschool teacher and had been promoted to assistant director and was not as active as I was when I was a teacher. I was sitting alot so I thought this was just a part of getting older. I never told anyone about the pain i had. Just thought everyone had different pains as they got older. It really did not bother me much. It hurt a lot when I would first get up but it would stop after I walked around. A few years went by and I can't remember but I don't think I had much trouble with it. When I turned 35 I was diagnosed with breast cancer. I had two surgeries and radiation. Two months after I finished my radiation my mother and I were on a trip to see my sister who at the time lived in Ohio. We live in Oklahoma so it was a 13 hour drive. My mother and I stopped at a gas station to get some gas. I got out of the car and felt the pain in my hips. My mother asked me why I was walking so wierd and I told her its nothing its a pain that I get in my hips after sitting for awhile. I have not felt it in a long time. I am sure it will go away. Then fear of cancer started entering my head. After having cancer anytime my finger would hurt... oh it might be cancer hee hee. It is a big joke between me and my pink ribbon sisters. We all had the same expeirence. Its not like that now. I don't fear cancer anymore. Anyway 10 months later and seeing many docotors I found out it was not cancer but AS. Believe me when I say this... I truely know what you mean when you think you are all alone. When I was diagnosed with breast cancer at the age of 35 I thought I was the only young women around that got it. I was so wrong. I joined a support group and met a lot of women my age and younger. you might want to check with your local arthritis foundation to see if they have any support groups. I know in my area there is not one for AS but I cant help to think that people with RA might have some of the same issues as us. I say that but if anyone else here knows more about RA they might be able to tell you if that is true or not. For me this group here is a great support.

i have been on enbrel for 3 years. Also many differnt meds here and there. I cant remember all of them because I did not get any relief from any of them so did not take them very long. I have started Methotrexate 4 weeks ago. I am not for sure why my symptoms have come back. I don't know if the enbrel stopped working or if I am just in a bad flare. I am still on the enbrel with the MTX.

I understand your frustration that noone seems to know what you are talking about. many people even in the medical field have never heard of it. I think it is up to us to educate them. I have been on this forum for only a week or so but I have been on others and I ask a lot of questions. I have learned a lot. Asking questions is the only way we can learn about our disease and how to cope with it. I posted yesterday how people cope with constant pain and I got some very good feed back. It was really great. I do ask my doctor a lot of questions and he is very patient with me. he understands that I am just wanting to understand more. I am very lucky to have the doctor that I have. I think also that asking questions to those who deal with AS have more understanding to what I am asking. I hope that made since.

oh i almost forgot... noone in my family has AS. I am hla b27 positive.
wow talk about rambling on hee hee
I hope you had a good day... Keep in touch
Raqul

Hello Angie and welcome to KickAS,
My age of onset was at age 10 and at the same age I was originally diagnosed with Juvenile Rheumatoid Arthritis (aka Juvenile Idiopathic Arthritis). At age 17 I was re-diagnosed with Ankylosing Spondylitis when the actual fusing began. I'm 37 years old now. I am HLA-B27 positive, and nobody in my family has that gene (as far as I know) or any type of arthritis. I have never met anyone with AS either, and I know the alone feeling you're feeling, especially when I was your age. Strangely enough, I still test positive for Rheumatoid Arthritis, but I cant get a diagnosis... not like that's going to help me any lol... (same treatments, same doctor lol)
Take Care,
James.

I was finally dx'd at 39 (41 now) ... had iritis at 9 years old... then started having lower back/buttcheek/hip issues at 29 with numerous doctor visits.

Angie,

I am 22 now, and started having worrisome symptoms at 19. I had pain from the age of 14, but it was not as severe, and I believed it was just growing pains. 19 was the first time I went to see a doctor for it, because I realized it wasn't normal. I just got diagnosed in the past month. I've known about AS for about 5 months.
I am fairly certain that my mother and grandfather have AS. I think mine is more aggressive than my moms, and my grandfather sort of slipped through the cracks.
I know about feeling alone. No matter how much loved ones want to support you, it's hard to really understand.
See you around!
Aly

Hi, Angie:

I was just over 20 when I began having symptoms and it took about seven years to get diagnosed. When I first got AS, the HLA B27 antigen was not yet connected with the disease. I may have exhibited some symptoms much earlier, but they were just characterized as 'severe growing pains' and I had several years of near-total remission. Then, after an extended fast, another very long period of remission.

Perhaps you will be able to avoid much of the damage that others of us are stuck with--good luck,

John

I had an episode of optic neuritis when I was 25. Started having joint pains in my hands at age 28. A couple years later I started having spinal pain. By my mid 30s, I was told by a neurosurgeon that my back was degenerating at an "accelerated rate".

Saw a rheumy for the first time 3 years ago at age 43. After the first rheumy blew me off with a dx of "getting older & a bad back", I sought a second opinion.

The second rheumy was the one who dx'd me.

And it only took 16 years.