Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group When did you first start having pronlems

Good to see you back John. Your racket ball story reminded me of several years ago some of my neighbors invited me to play racket ball with them. I had played often when I was younger. When I played racket ball with them I found my movement side to side didn't work very well. They didn't invite me back, and that was the end of my racket ball.

Hey Tina;
I was ten when it started, in a hip. Took 11 years and 30 docs to diagnose it, and now it's almost everywhere. I'm 25 now. I don't have much fusing, not everyone does, I've only got a couple of joints fused, including one SI joint and one thumb.
I'm glad you found KickAS - it's such a great help to be able to talk about it here!
*hug*
Bridget

i developed very painful gastritis when i was 30 (1993) and then when i was 35 (1998) i started having serious tendon issues (tendonitis, tendon "pulls" or tears) sort of out of the blue (i even played tennis in my 20s; now normal activities tear tendons), then in 2000, i had my first SI "event", the first of many. i call it an "event" because, one second i felt fine, and the next, i had a bit of tightness in my lower back, and the next, i had gripping muscle spasms that had me on the floor unable to get up.

as for the diagnosis.....i'll let you know when that happens.........

i've been "fired" by orthos and physiatrists that claim "i can't help you, you need to go to a rheumatologist." fortunately i've also had orthos and physiatrists that realize they can't help me prevent the tendon injuries or SI instability, the body has a mind of its own, it seems, but they keep putting me back together......bless their souls!

but the rheumies' verdicts:

rheumy #1: no clue, sorry.

rheumy #2: fibro and rare collagen disorder. long explanation for why i know that's wrong, but it involves every other doctor ruling both out and my not fitting either disease when i read up.

rheumy #3: not enough evidence to diagnose you with an autoimmune arthritis. sorry, have a nice life.

rheumy #4: the current one. seriously, once the CT scan of my SI came back with some osteoarthritis showing up, i honestly think he's convinced i just have a little bit of osteo and that's why i have SI pain; i'm sorry, but cyclic screaming pain? that really doesn't make any logical sense. and he said he couldn't explain the tendon injuries either. and i should stop looking for a dx and just try to treat the symptoms with NSAIDS (hello....can't take them, remember? edema, gastritis......)

don't worry, endocrinologist #2 is this coming monday, and if need be, rheumy #5 is in my future, but i've exhausted my city's rheumies so will be going out of town to someone who is supposed to be good or to a place like mayo.

i've been on doctor strike since the last rheumy appointment, but i'll get back in the saddle soon.

whether its autoimmune like most of my doctors think (other than the rheumies, ironically) or endocrinological, no one should tear a tendon or ligament from: pouring water from a pot into the sink, putting their seatbelt on, walking, stretching, doing toe raises, gently swimming, etc, unless they're like 100 years old or something. at least that's my hunch.

so, that's my story......

and believe it or not, that's the short version! LOL

sue

Hi Tina,

At age 10 is when it all started for me, when I was diagnosed with JRA. For the next 7 years, I had heavy swelling in the ankles and knees. Then at age 17, I was officially diagnosed with AS because my hips started going. I got them replaced when I was 19. I'm HLA_B27 positive but I didn't find this out until about 2 years ago.

Currently, I'm 38, and have all sorts of problems lol. Been through several surgeries already, my entire back is fused, I have fusing shoulders and collar bones, ribs hurt and all that, can't forget the stomach and heart problems too. I haven't been able to turn my head in years. My hips have been hurting again lately too.

1.5 more years to go I will have been fighting AS for 30 years. I'm starting to get tired of it too lol.

Take care,
James

My problems appeared when I was pregnant and worsened throughout until I had to use a walker. Everyone assumed the hip pain would resolve itself once I had the baby - it lessened but still persisted. My doctor ordered Xrays, then send me to a great sports medicine doc who suspected AS. They sent me to a rheumy who then confirmed it through the Xray and Mri - inflammation of the sacroiliac.

I suppose I am lucky to have been diagnosed so quickly - under a year.

Mine started when I was 16. Repeatedly diagnosed with bursitis and given cortisone injections with no relief. Told to stop running; stopped going to doctors instead. Last year (27 y/o) I saw a new internist who recognized that my pain was not in my hips but my SI joints. She suspected AS and sent me to a rheumy. Before I could get an appointment preliminary blood results came in showing that I had some type of liver injury going on. Over the next 2-3 weeks it progressed to liver failure (kind of takes all other problems off the table). Luckily it resolved w/o transplant. The alleged culprit? Ibuprofen. When I saw my rheumy for the first time he noticed my joint hypermobility and multiple bruises. This got me a trip to the geneticist who diagnosed me with Ehlers Danlos Syndrome (EDS) Type II. This netted me a visit to a cardiologist who told me I had a ventricular septal defect, mitral valve prolapse (which I knew), tachycardia (also knew this one) and mitral regurgitation (didn't know that one). After seeing this round of MDs I went back to my rheumy. The EDS could explain most of my symptoms but the SI pain was still unaccounted for. $5000 in imaging later I was diagnosed with AS.
In my case several factors delayed my diagnosis:
1. Nomenclature-hip is not equal to SI joint
2. Liver failure takes precedence over EVERYTHING!
3. EDS makes me super stretchy. This masks a lot of the fusion effects.
4. One zebra (rare disease) is bad enough; it is hard for doctors to accept that I have a whole herd of them!

Hey, Orch:

Yeah, that happened to me the first time I tried--the lumbago raged and did not allow me to do that swivel thing. It was only after I fasted those 20 days that I was able to take up the sport in earnest and I even became a rated player in our local league.

I used to play an average of 3 hours straight in my weekly game, so my stamina was amazing then and the AS remained in remission as long as I could fast it away on occasion, since my diet was so bad back then.

Hope that you can get rid of that cactus-spine effect; it is murder!

One of my racquetball opponents never let me win--he was a tall lanky Nordic fellow who played tennis a lot, also. Despite my continued failure against him (I think he played me just for the exercise), he kept trying... Comforted me with the story about his cousin, a physician, who had his own racquetball court. That court was just finished when he went to visit, and they played quite a bit. By his next visit, however, his cousin's wife had turned the court into a potting shed!

See Ya sometime--maybe we'll have another Vegas get-together for the KA TENTH!

HEALTH,
John

It depends which symptoms I include as to when I started having problems. My joint problems started in August 2007 when I had a fall that hurt one shoulder. By December 2007, both shoulders were very affected so I was going for massage etc. thinking it was linked to the injury. Then, in February 2008 I had a gastroscopy that showed a narrowed, damaged oesophagus. In July 2008, the joint pain suddenly spread to my neck, ribs and sternum, the shoulders got much worse and my upper arm muscles became painful. The addition, after a few more weeks, of S.I. and hip pain and stiffness led to a tentative diagnosis of AS. My ESR and CRP were very high so they were satisfied that I had an inflammatory arthritis but were having trouble deciding for sure which one. While my axial joints were the only ones involved and I had a low RF, AS was a sensible diagnosis. Now, however, I have wrist, knee, ankle and toe involvement so there's a question mark. I also get repeated episcleritis which is more common in RA than AS.

Hey Wendy:

I don't have RA, but do have ankle and knee involvement and my toes are a mess. I once "caught" a toe joint inflamed--I guess most of the time I just ignored my toes, or put toe pains down to shoes or something.

Episcleritis is certainly one of the many sequelae of AS.

Regards,
John

I had optic neuritis when I was 25, which isn't really associated with AS, more so with MS, but if I were a betting woman, I'd say in my case they were related.

A couple of years later on the heels of this episode of optic neuritis, severe pain started in my hands - I had deformity within a couple of years. Then the spinal issues started, which intensified quickly. I was told in my early 30s by a team of neurosurgeons that they had never seen a woman my age with so much "arthritis" in her spine. But no one could ever put all the pieces together - I was usually just told it was stress, weight, hormones - and of course getting older - which one doctor told me when I was like 33 or something.

Over the next several years I saw all kinds of specialists, mostly neurologists, as it was always felt my issues were neurological in natures as I have always had a lot of neurological symptoms.

When I was 42 I was finally referred for the first time to a rheumatologist (he was an idiot), but after my bloodwork looked pretty nasty, he referred me to a "real" rheumatologist who didn't discount my history or my symptoms & started treating me aggressively - and it only took 16 years to get to the point.

I took Prednisone for most of my teenage years for an unrelated issue which doctors at Cleveland Clinic told me may have "masked" the condition until it was finally triggered again in my 20s. I am B27 positive, although my first idiot rheumatologist told me that meant nothing.