I have AS also. My hips, knees, tailbone and lower back hurt all the time. It will radiate up in to my middle back and shoulders depending on the weather, my amount of activity etc. I've been on methotrexate, which helped a bit, but couldn't afford Dr. visits every 6 weeks for blood tests. I've been on sulfasalazine, which really helped but gave me mouth sores so I'm allergic to it. The only thing I take right now is 4-325 mg aspirin 3x a day. It's not helping much anymore but celebrex and the like don't do anything. So, I'm kinda stuck.
I'm HLA-B27 positive. Spondylo means spine and itis means swelling. So the pain is mainly in the spinal area but like I said, it radiates down and up depending on what I do.
Good luck to you. I hope you find some answers.
istone, Keah posted the criteria used to diagnose AS in one of your other threads. The criteria are a list of symptoms and tests results used to make the diagnosis. You might wish to print them out. Are you having trouble understanding the terms used in her list? I think there are people here that could explain them using less medical words.
Here's the link to Keah's list: http://healingwell.com/community/?f=10&m=722984&g=739141#m739141
Post Edited (Marius123) : 3/2/2007 6:09:08 PM (GMT-7)
i didnt ask about criteria and i understand perfect english dont worry.
i asked about symptoms and is clear now.
thank u so much !
yeas i read your last post about AS. the point is that i dont know that i have .
i have pain in all my joints. now is more in neck, back, hips and ankles, shoulders too.
is so strange and is progressing more and more. im terrified. i will have an appt on rheum finally on end of march and hope to get a good rheum to dx me. when i have a shower and water falls on neck is so painful is like something heavy stuff on my neck.
could be DISH on neck and AS on the rest of my body or OA? is a mistery
Well, i'm not a doctor, but coming from that you said you don't have positive blood work for AI disease and you said that you haven't had any swelling or redness of joints, and you have spine involvment, and also correlation with the GI issues...yes it definitely sounds quite that it is seronegative spondyloarthropathy. But which exactly type of seronegative spondyloarthropathy may take years to diagnose correctly and that's why you have to arm with a patience OA is in total conflict with the 'migratory pattern', so if you have migratory aches JUST FORGET about OA, and also OA is extremely uncommon at yr age. OA is an eldery or trauma disease and is caused by the wearing out of the joints or joint traumas. so you can't have wore out joint today on that place and tommorow on other place? You see? It's illogical.
I don't want to confuse you but GI issues, and any type of seronegative spondyloarthropathy very often goes together. It is not necessary to have Crohn's disease if you have GI issues, and it is not necessary to have AS if you have back or neck aches. But one thing is almost certain that you have some type of seronegative spondyloarthropathy and you have to know that yr not the only one having this problem, we are with you and will always help you with advices and support. Spondyloarthropaties are very common problem. Almost 1% of the people in the world have some type of seronegative spondyloarthopathy, some don't realize it, others not-correctly diagnosed because of very mild symptoms...anyway, it's not something unearthly, it's human.
Yes, everything sounds rational up to here, but there is always smth that engages our mind when we talk about our problem. It is the 'cure'. The problem is that when docs reach to the following conclusion about yr disease they starts to wait for development and stops thinking about the cure, and this is the most d.mned and wrong thing about these type of deseases. And this is so hard for people who are new with this, and gotten used to think that every disease has a cure. Yes I beleive that any disease has a cure, but unfortunately the docs still don't know the cure for all of them. Docs now just wait for development of the symptoms and they treat them according the protocol, then wait for other symtoms and they switch the medicines, tries something else and then again wait for development. They know there is no cure and majority of them are not that much ambitious and/or educated finding a cure (it's normal).
Well, my advice now for you is to keep searching for an innovator doctor until you find it, a doctor who will do all the test which he finds as needed, and who is realy interested at yr condition and these type of diseases (at all). I would recommend you not to try self-treating, because it is extremely dangerous for an uneducated person to buy and drink drugs on it's own, it's almost comparable to a crime. While waiting ...take yr current medications and you may also try some natural ways of healing... but again!!! use with caution!!! (low dose first) because herbs also keep some even smallest risk. Try some diets, I've heard low-starch diet helps for the spondyloarthropathy sufferers because they modify the intestinal microflora reducing the amount of the bacteria considered as the AS causaitive (but not prooven yet). Read this : http://www.drmirkin.com/joints/J103.htm . Try herbs.... think positively, there is a cure!
Post Edited (Marius123) : 3/5/2007 10:19:10 AM (GMT-7)
Erin happy birthday!
thank u for encourangement,yes finally i have appt on end of March.
hope they will find out what i have cos i suffer for 1 and half year.
here if the tests came negative they rejected the papers they are so ... dumb.
also i consulted 3 rheum. and they could dx.
now cos i was on infection disease dr they send them referral to rheum. clinic and now they agreed to have a consultation. my case is indeed very difficult cos i my blood tests are negative and my arthritis mimics so many: could be AS or ReA or entheropathic who knows.
im still in pain and antiinflammtory meds seem to not help anymore.
all my joints hurt ..neck,spine, hips and ankles.
thank u Erin and Marius for help and all of u who replayed me. indeed i suffer so much and i find
comfort and help on this forum