istone said...
hi Marius
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
Marius123 said...
istone said...
what are the symptoms for AS? i have stiff neck and spine and when i walk i have pain in hips and ribs. does seem to be AS symptoms. also ankles feel aches.
i know is difficult to dx AS blood test r negative im so frustrated and NSAID dont help anymore i have more and more pain in back and neck and fingers too... pls reply i will be so grateful
Yes Iris,
Pain all over the body is a clinical characteristic for AS. Hips, ribs, ankles.. sholders are commonly affected.
Sacrolitis (inflamation of the sacral joints) is a very distinctive characteristic for all seronegative spondyloarthropaties to which AS belongs. RA alone do not have sacrolitis. The problem is that sacrolitis are often asymptomatic and can be seen only on MRI or bone scinthygraphy. Mine was detected that way.
Pain all over the body joints and joints surrounding tissue is clinical characteristic for all of the illnesses of the seronegative spondyloarthropathy group. When there are no visible changes seen on X-rays yet, when whole body MRI or scinthygraphy is done then a good rheumatologist should be able to define correct whether you have RA or seronegative spondyloarthropathy. Once it's defined that you have spondyloarthropathy then what exactly type of spondyloarthropathy you have may come out as a difficult task. But the pont is that....ah..I just mean that it don't necessary mean to have exactly AS.
Did you read my post at yr previous topic? https://www.healingwell.com/community/default.aspx?f=10&m=736834
If did not, then read it, it might be helpfull for you.
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!