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I'm not sure if anyone is still keeping up with this...I barely am! 
I tested positive for the RA factor, positive for ANA, and positive for another test (the anti-CCP, I believe - I'm not sure because I didn't get a copy of the results). I saw the results and we went over the scores and what they meant, but so much was going through my mind I don't remember everything that was said.
BUT, I still don't have a RA diagnosis because...  Well, I think it's because the positives weren't positive enough? And because my sed rate is normal, which confused my doctor.
I see the rhuemy in two weeks to go over these latest results and then he can diagnose me or decide to do more tests or take a wait-and-see approach. That's sort of how my doctor explained it.
I'm so confused, but I believe I probably am in the early stages of RA.
Hey, do ya think exercise will cure it? 
Edited by Maria! Maria! (03/08/06 11:34 PM)
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If you tested positive for the RA antibody AND have joint swelling and pain, its a pretty safe bet that you do have RA! Be sure to stress to the rheumy about the swelling, even if it isn't present that day. The swelling in my hands varies from day to day as well. I saw my rheumy this morning in fact and, I guess luckily, they were VERY swollen. From all the research I've been doing, everyone recommends treating it NOW. If you take the wait and see approach, irreversible damage can be done in a short period of time. Most of the DMARD (I think thats the acronym they use) drugs will take 3-6 months before they start working, why wait until your absolutely miserable before you begin them. You want to slow the progress down NOW as much as possible. Sed rates are used to try and measure the amount of inflammation in your body but they are not real accurate.
I opted for the placquenil but there are several other drugs that will slow the drug down as well. I can't remember what your "child bearing" status is? Several of the other drugs they use for RA are not compatible with pregnancy but placquenil can be taken while pregnant. Also, the positive ANA test, that's the Lupus test, can be a big issue when trying to get pregnant.
I know you were joking about the exercise however, do know that even when your hands are swollen and sore, you do need to keep them moving. If you "baby" them too much, you can lose a lot of range of motion and mobility! Someone suggested to me the hot was treatments and they really do help! You can by the wax machine and wax at bed, bath and beyond for like $40! I've been going to physcial therapy for several weeks now and they actually gave me this ball of silly puddy like stuff that I'm supposed to squish with my hands and fingers to try and keep the joints lose and moving.
Please keep us posted!! I know your probably over whelmed right now but I'm so glad your seeing the rheumy dr again soon! Hugs!
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Taking it one day at a time.....
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Well, at least you're getting somewhere. Even if no one asked you if you wanted to go. You mentioned in another post about doing something like scrubbing the floor before your next appointment, to bring on the swelling -- this is an excellent idea, maybe if the rhuemy actually sees the swelling he'll be more inclined to actually diagnose you.
So is fibro still a factor? Or if it is RA does that mean you don't have fibro? Or could you have both like Michele? I hope not.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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What did he say about the positive ANA? Because that is the lupus test. I know mine came back positive but it was speckled and at a low titer. So the rheumy doc said because I didn't have much joint pain I probable don't have Lupus. Isn't crazy how these tests can say they are for one disease but the minute you test positive and don't have certain symptoms then there are a ton more tests they have to do to rule it out! I am going through this right now and it is frustrating!!
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I'm not even going to pretend to follow all the tests you're talking about, but it sounds like your doctors are hacking away at the underbrush. Frustrating, scary, maddening, and way too slow, but unfortunately necessary.
Please remember you can ask for help. Your freemate (aka, significant other), siblings, parents, and friends can go with you to see doctors and get tests. Sometimes having someone else with you can make everything go easier, especially if it's just one more test or doctor visit too many. Also, having someone else there to hear what's said means you don't have to remember it all yourself. Even better if your companion drives, so you can just be a lump until you get there.
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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I've had offers from friends, family, and my partner to go with me, but I was just so used to doing things on my own I didn't take them up on it. You're right. I need to be a lump sometimes! The drive is long (same city where I work, so almost an hour away) and it would be great not to have to worry about the drive. So, I'm definitely having someone else come with me to my next rheumy visit.
Thanks, Sand! 
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Quote:
If you tested positive for the RA antibody AND have joint swelling and pain, its a pretty safe bet that you do have RA! Be sure to stress to the rheumy about the swelling, even if it isn't present that day. The swelling in my hands varies from day to day as well. I saw my rheumy this morning in fact and, I guess luckily, they were VERY swollen. From all the research I've been doing, everyone recommends treating it NOW. If you take the wait and see approach, irreversible damage can be done in a short period of time. Yes, I don't want this to happen. My PCP didn't seem to know much about RA or what the best treatment options are, but after meeting the rheumy he didn't come across as the type of doctor to wait for it to get worse. Most of the DMARD (I think thats the acronym they use) drugs will take 3-6 months before they start working, why wait until your absolutely miserable before you begin them. You want to slow the progress down NOW as much as possible. Sed rates are used to try and measure the amount of inflammation in your body but they are not real accurate.
I opted for the placquenil but there are several other drugs that will slow the drug down as well. I can't remember what your "child bearing" status is? I'm not planning on having children. I've been with my partner for ten years and we both don't want children. OF course, I don't know how I'll feel five or ten years from now, so all I can say is that I'm not trying to get pregnant. Several of the other drugs they use for RA are not compatible with pregnancy but placquenil can be taken while pregnant. Also, the positive ANA test, that's the Lupus test, can be a big issue when trying to get pregnant.
I know you were joking about the exercise however, do know that even when your hands are swollen and sore, you do need to keep them moving. Yep, I have heard this. My piano teacher had RA so bad that her fingers were crooked. She kept playing the piano and had one of those hand ball things you described. If you "baby" them too much, you can lose a lot of range of motion and mobility! Someone suggested to me the hot was treatments and they really do help! You can by the wax machine and wax at bed, bath and beyond for like $40! I'll have to check this out! My fingers are always cold too, so the heat sounds very nice. I've been going to physcial therapy for several weeks now and they actually gave me this ball of silly puddy like stuff that I'm supposed to squish with my hands and fingers to try and keep the joints lose and moving. I think I'm going to get one of these this weekend.
Please keep us posted!! I know your probably over whelmed right now but I'm so glad your seeing the rheumy dr again soon! Hugs! Michele, thanks for taking the time to share your tips and wisdom! I don't know what I do without all you guys!
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Angela -
She didn't say much about the ANA test, other than it was positive and she couldn't remember enought about it to interpret it. So, I'll have to wait and see what the rheumy says about it.
It is a lot of tests, but I'm just glad they're finally listening to me and trying to figure out what's been going on with me. A little over a year ago, I went to see a doctor (my PCP's partner) to talk about these same problems. She gave me a rectal exam (even though my IBS was stable at the time and not an issue), made me do squats and push against her arms to check my muscle strength. She told me I was "really strong" and then told me to see a nutrionist and take a multi-vitamin! "I'm not going to give you antibiotics," she said. When I told her I didn't want any and that I didn't see how vitamins would help the joint and muscle pain, she said, "What do you want me to do for you?" Aargh! It still makes me angry. I let my doctor's office know I didn't like her and to not schedule me to see her when my regular PCP was out.
Sorry to go off about that, but it still bugs me!
You know, even though I'm confused right now, I feel hopeful. It's good to see that my doctor and rheumatologist are working together in order to help me. And neither one of them has even assumed that the pain and fatigue might have to do with depresssion.  I feel like they're really listening to me and respect me.
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Quote:
Well, at least you're getting somewhere. Even if no one asked you if you wanted to go. You mentioned in another post about doing something like scrubbing the floor before your next appointment, to bring on the swelling -- this is an excellent idea, maybe if the rhuemy actually sees the swelling he'll be more inclined to actually diagnose you. Yep, that's the plan. I'm scrubbing the tub and cleaning the floors before my next appointment. At least, when I get home after seeing the rheumatologist, I can enjoy a clean bathroom!
So is fibro still a factor? Neither my PCP nor the rheumy have mentioned the fibro. I brought it up to my doctor, but she seemed to be thinking it was RA, which is why I was sent to the rheumy. Or if it is RA does that mean you don't have fibro? Or could you have both like Michele? That's possible. I'll have to bring it up to the rheumatologist next time I see him. I hope not.
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I know how frustrating it is to live in the land of limbo with inconclusive test results. No treatment plan because they aren't sure what exactly to treat.
The whole gluten, gallbladder test results have had me in limbo for some time now...as everyone knows too well by now. I wish I never had the stupid tests done.
But, I'm sure your doctor will give you a definite diagnosis. I wish you the best, sweetie.
I know it's hard to ask for help....but try to ask and don't keep apologizing for the inconvenience afterwards!
Keep us updated on the breaking news!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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