Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Autoimmune Rheumatiod Arthritis???

Hey CC! Do you have RA or AS? Just wondering!!

Craig

Hi Craig, I have Ra with the most inflammation occurring axially... it is 'usually' more peripheral...

Interesting CC - my RA was axial with no peripheral involvement until about five months ago when my hands and feet kicked in. That was why I had an earlier tentative diagnosis of AS. My shoulders and hips are still some of the worst affected joints. My sternum is also affected and my coccyx. The coccyx pain manifested as buttocks pain at first and led to an assumption that it might be my SI joints.

Now, however, my hands are affected very badly. In the morning I can't move my fingers or thumbs very well and they're extremely painful. Also - I have no strength in them at all. Can't turn door knobs and taps or remove lids from containers. All very frustrating.

Very interesting to note that your RA developed axially as well. What were your first symptoms, CC? And how did they progress? What made your rheumatologist make a firm diagnosis of RA? I'm interested to see how similar our patterns were given that we both ended up on KickAS!!

hi wendy,

can you link your old post where you described how they determined that it was in fact RA and not AS. i remember some of the details but not enough of them and can't seem to find it quickly, but thought you might find it faster.

as for your hands, i love my paraffin wax bath by therabath. not that its a cure all by any stretch, but it sure feels good. especially when i first wake up and want to eat before a full fledged shower, and then also right before bed if i took a shower and then stayed up before heading straight to bed after the shower. i leave it plugged in as they suggest, in a safe spot out of the way.

Hi Sue,

I went to look for the post you mentioned and got distracted by the long, interesting post that developed from my description of my visit to the new rheumy back in April! I'm heading back to bed now but will have another look this evening.

Thanks for the paraffin wax suggestion. I had that done once by my hairdresser !!!! and it was quite soothing.

Hi Wendy, sure...

The very first thing that sent me to a rheumatologist was neck pain. I was sent by my GP. The very top had straightened, I was told due to constant muscle spasms. That was 17 years ago. When my pregnancy put me in hospital for three months, rheumy was contacted and kept me on daily heparin because the anti bodies make for sticky blood make for premature labor (so I was basically contracting for the last 12 weeks) (14 year old is fine and just hit 6 foot!). AT that time I was told I was ANA positive, and let's 'keep an eye out for Lupus'. Great.
Four years later, second pregnancy, so got a complete blood work up (work-out) and all ana and antibodies gone. (See Trudi's post on remission).
For the next 8 years only slowly creeping problems with back and knees, such that I thought it was because I was so active... I deserved to be sore (I rode 5 days a week and did yoga 3 times a week, gardened every day).
Two years ago SI kicks in... 6 months later, after nothing helps, I return to rheumy (after 8 or 9 years) and am positive for rf for the first time ever.
But now it's rheumy's jr partner and she doesn't really want to 'comment on the discrepancies' and I don't feel like I really know what is going on so I google the list of meds she wants me on (which I resist for half a year) and I find KA. And I can't believe it. So I go back in and say 'well, do I have AS? And she says 'well, that's what I was thinking, but your work up from 17 years ago says you're hla negative'. I can't get a straight answer about that, because RA has it's own hla's and I've read RA and AS are mutually exclusive...
And I have to say, sometimes I've asked so many questions here, that I feel reluctant to bring up the ones that got different answers before, even though I crave some clarification there...

so...
neck pain, ANA positive, anticardiolipid antibodies. then
back and knees, then
SI, SI, SI (some knees and shoulders) no ANA or antibodies, positive rf.

sulfasalazine has helped all pain but SI, and that is much much better, and still getting better ( maybe because of the ldn?). I'd say my pain has remained at a 2 or 3 for the past 3 weeks... oddly I am having more stiffness than pain, or maybe when the pain was a 7 I didn't notice/care about the stiffness)...
my boring story.( Sorry it's all over the place, It's my kids first day of school and I have to go wake them up) Does it look familiar?
I hope you feel better tonight.

cc

thanks wendy, when you get a chance, i'll look for it.

hubby just thinks i'm playing with the wax. he tries to convince me that if i just did more dishes.......

i do like my wax bath, its a nice big one (no not big enough to emerse my whole body into ) , though there are cheaper brands, but i thought, if i buy a good one, it will probably last longer.

Hi CC,

back in 2002, after a rheumy said he was stumped, my physiatrist made the comment that there are lots of known autoimmune diseases and its always possible that i have one that doesn't even have a name yet, but she'd still treat my symptoms the same way regardless of what its called. that worked for awhile.

but then that wasn't good enough. fast forward. still have doctors making similar sorts of statements, could be spondy, could be something even rarer, so let's just try to treat it.

and from what i've been reading, i get the feeling that a lot of the drugs, like LDN, will work no matter which "arthritis" it is.

though knowing would be good because then could be more specific in the treatments (and of course wouldn't have to fight so hard for treatment), if we can do it empirically, trial and error, and find something that works, well, that's better than nothing. and new research is always being done.

still, its all very exhausting.......

but glad that you may be finding things that work for you.
i hope so.

Sue, I just have to say that the immunologist I was sent to back in June (to see if he could figure this out) also said that "you definately have an auto-immune disease but maybe yours just doesn't have a name yet" OMG, I just about fainted when I read your post. Maybe we have the Sue-Jewelz syndrome? Since we are so much alike in our symptoms..... hmmmmmmm

yes, it does sound like we have a lot in common. but i don't think its just you and me. others here talk of tendon and ligament problems, inflammation, damage, even a few talk about surgeries.

and then the SI, we all seem to have that in common. that's the main thing that brought me to this site.

and then there is the gastritis. crohn's generally attacks the large intestine, but my stepfather had a good portion of his small intestine removed. and the last time i was scoped, it was my duodenum that was inflamed (where the stomach ends and the small intestine begins). and so many people here talk about IBS. and when my stomach is inflamed (fortunately, i can tell quickly as even a little (as seen by endoscopy) causes a lot of pain), my food is not digested, i lose weight, my bowels are a mess. but for me its not IBS but inflammation of my stomach (and who knows, maybe further down but no one has looked). that was actually my first symptom and preceded the arthritis by about 5-6 years.

just all sounds a lot like spondy (gastro inflammation and arthritis).

when my stepfather developed crohn's in the mid 80s, they didn't know what caused it. then a few years later, i remember reading reports that they thought it might be autoimmune. now, they know its a spondy. back then, they didn't know any of that. and back then, all they had for him was prednisone. they've come a long way with understanding and treating crohn's.

so, i wouldn't be surprised if all of us under the undiff spondy or generic seronegative spondy have some other variety of spondy that just hasn't been IDed yet. then again, i see how not everyone's AS on here has progressed exactly the same way, and how it has taken some people a long time to be diagnosed because at first there were no "markers" or they were hard to discern. so even with AS, it seems like there is still a lot to be learned. seeing the progress with crohn's gives me a lot of hope though that they will sort out all the spondies.

another reason i think its important for us to try to get at the truth, may help others in the future. while selfishly, just finding a drug that works is all i really want, that won't help anyone else.

and then again, another kind of arthritis all together? one that attacks tendons and ligaments? hey wait, that sounds like spondy......and back to what i just said a few minutes ago......one big loop round and round.

will say, i was on a fibro site for a few months and just never could relate to anything over there. came here and i felt like so much of it fit, for the first time ever. what a revelation for me!