I was at work yesterday when I got a call that they have an opening and would like to see me tomorrow at the rheumatologist's office. I had my first flare in May and could only get an apointment to see a specialist tomorrow. It has been a long wait, and I have been very patient...but, to tell you the truth, now that I am going... I am so scared.
When I had my flare, my joints were all red and swollen and warm...but now, of course, I don't see the swelling I had before. I am not as sore, though last week I had a hard time to finish my shifts at work. I probably will look just fine to him tomorrow. Part of me is thinking "well, I did ok all this time without treatment or anything, maybe tomorrow will be a wast of my time and the dr.'s time", when the other part is saying it would be nice to know what that was that hit me like a truck in May. I did not enjoy getting help getting dressed and going to the washroom.
Maybe going to see the specialist will be a good thing, but since my flare, I have returned to exercising and am doing well. Sure, it took me two months to be able to put my own socks on, but now I seem to be better. Of course, this specialist didn't see me back then - he will see me now. It is so frustrating! I just don't know what to expect tomorrow, and that is the thing that worries me the most.
You know what sucked when I went to specialist first time. He made me go
Susan
Well, I am leaving soon... it is a two hour drive to this dr. No, I am not on pred, I was given celebrex by my family doctor in May. Today is my one day off. I am a little bit sad to waste it on this trip to see someone that I know already what he is going to say -which is probably nothing. I have seen him before. A long time ago for my knees. After an hour, he said I had " mostly likely a mechanical problem" and that was that. No solution or anything. So, I am not expecting much today. I am kind of shy to be going there again. lol Dar, please push. Emphasize how bad it was. My doctor rarely sees me at my worst. But I'm still sick. Just because you might not look it today, try tomorrow. There's a good chance you will be. It is the nature of the thing. Don't be satisfied with an "oh well, I don't see much problem here."Deanna is so right. It is hard to get in to specialists. Make the driveHe has ruled out Lupus, which is great! I am sooo happy. Because the small joints in my fingers and toes are not involved... they were stiff, but not swollen, he says he can't rule out RA,but everything else sounds like it. Also, with my lungs and thyroid and esophagus, he thinks they are all related and are giving me trouble because of my arthritis! I never knew they could all be connected. So, I had to take a chest x-ray (he said the lymph nodes in my lungs could be inflamed too), and told me to make an apointment to see him again in six months. I actually feel really good about this apointment. Like I accomplished something. He was so nice too. We laughed a lot. All in all a very good experience... got to go... company for super.
Congratulations, Dar! Now - did he prescribe anything for it? RA isn't something where you can just wait around 6 months & see what happens. If he suspects you have it, he should have put you on plaquenil, at the very least. Unless you have a viral form of RA, it's not going to just clear up over time, and I'm very worried about your joints. Glad for the good news, but also have the same concern as Fiona.
Fiona's right Dar. I'm glad you got in to see the doctor sooner than expected; and he sounds really nice....but I agree that 6 months is a long "wait and see" period.
Did he do blood work?
If you continue to have problems and if they get worse especially I'd try to get in a little sooner and ask why he's not starting you on some sort of treatment to slow the progression of the disease early on. I'm a perfect example that early treatment can make all the difference in the world.
I'm in my 12th year now and although over time things have progressed and I've had to use stronger treatements; I'm in relatively good shape for someone with this disease. Not all are as lucky as me.
RA left untreated can do damage that can not be reversed later.
I'm not trying to scare you....just want to make sure oyu are aware of it.
No, he didn't give me anything but said that the celebrex I was taking was alright. At least this time he said he wanted to see me again. I saw him in 2001 for my knees and he only said I had a mechanical problem. That was it. No help for my pain or any other visits. This time he tells me it is some type of arthritis (might be RA, but he isn't sure yet because the small joints in my fingers or toes don't swell). He said I might have scarcoidosis along with the RA. Has anyone ever heard of that before??? I do have problems with my thyroid and esophagus that he suspects is all tied into the arthritis that I have. I don't know. I am so tired.
I don't know Dar. I'm certainly no doctor....and often we hear folks come here and we quickly assume they have RA; and it could be something else entirelly. Not know you or your history there's no way for us to know much of anything. We do want to be supportive though.
I'm not sure what Scarcoidosis is. Do a general search and I'm sure you'll be able to get info on it.
I'm sorry we can't be more helpful right now.
Thanks Lovie! I never really thought about RA until this specialist said so. I was in my family doctor's office and he saw me just at the end of this, I guess you would call it a flare. He said it looked like RA to him. He said my labs point to it, and my symptoms and what he could see when he examined me, but it baffles him that my fingers and toes don't swell.
Really though, I don't care what it is. I am just happy it isn't cancer or anything like that! My friend is really going through a tough time... she is 30, just getting her life together for her and her son, and was just diagnosed with cancer every where except her brain. It is worse at the base of her neck and pelvic bone. She is in the same hospital I went to yesterday for my appointment, and they told me she won't make it to Tuesday. It put everything in perspective for me that is for sure. I can wait. If it take them years, then it will. The doctor was laughing at me though because he said he won't rule out RA. Every time he would say that I would say that it might not be too! He is a person I feel I can trust, and I came out of everything yesterday basically satisfied and happy I have seen him.
He was making me go for a chest x-ray to rule out scarcoidosis... which I looked up and it doesn't really apply to me. I don't have any lumps or bumps on me. But, you never know...
Oh my gracious! I'm so sorry to hear about your friend. It does make you feel fortunate doesn't it? Makes you thankful that your problems seem small in compairson. It's still hard to understand though. I hope she's comfortable and at peace. Bless her heart. I feel real bad for her and her family. It's just so, so sad when you hear of someone so young.
Early on my fingers would swell....and so would my knees especially; but all in all I don't have a lot of swelling. Some of us don't. It doesn't mean they can rule out RA. I wonder what your GP meant by all the blood work points to it? That's a big red flag because many of us with RA; myself included don't have blood work to prove it. My SEDS Rate is elevated at times but the main test for the RA factor is negative. The original RD I saw didn't put too much stock in that though and dx'ed me with RA anyway. I've seem 2 other RD's sence then and they agree with the Dx. SO; after all this time I've just accepted it as true and moved forward with treatments. I can't ignore the x-rays and MRI's that show erroisions; so I suppose that's my evidence.....Although to this day I still ask my current RD "Are you sure it's RA" He just laughs at me and says "I'm sure". Can't blame a girl for trying right?
You've got a good attitude and that's gonna take you far my new friend. Keep it up. It does make a huge difference in how you'll manage.
Keep coming here too. It helps to be around friends in the same situation.
I never have swelling in my toes or fingers so I don't get where this doctor is coming from. I think he has given you a little too much reassurance.
If you start having symptoms again, get yourself back in there and insist on something more than Celebrex which is only and antiinflammatory and pain reliever. It doesn't stop the progression of RA.
It is worrisome that your blood work has already indicated possible RA.
Assuredly, you are nowhere as sick as your friend. But don't let that cause you to ignore where you are at. Six months is a very long time with RA. Even two months can show significant changes.
It might be good news, but I'm not sure it is honest news.
It can take years for bloodwork to test positive for RA and you can have years of pain without swelling. My advice to you is to keep a written record of the times you do have flares to take with you when you visit the doctor. You have to be your own detective. I keep a diary of symptoms that I keep together with insurance forms, etc . It goes with me to all doctors appointments.You all are right. And it is good advice I am getting. I always feel better when I come here. I don't post often, but I read everyone's postings.
Everything I read about RA says there are certain criteria that you must meet to be diagnosed... and nothing ever says that you MUST have swelling in your finger joints, or toe joints in order to have a diagnosis. Even my family doctor, when he saw my blood restults, thought of RA or Lupus right away. I just remembered the specialist asking me if I get any rash or reaction when I go into the sun. I said no. He was asking me so many questions so fast. These days, my thinking is a little cloudy. But, I said no because I never go in the sun for too long... I feel sick when I do. I can't explain it. I just start feeling nauseated. But I never thought of that when I was there. Maybe I should write things down once I think of them, or if something happens. I was also thinking of taking pictures if anything happens again. Every day after work I am almost as swollen as when I had my flares. I am wondering if taking pictures would be silly? I just get so angry that once I do get an appointment, my symptoms seem to dissapear!
Dar, nothing that documents your condition is silly. It's a very good idea. Photographs, if they'll show what's going on, are also good. It's very hard to remember everything when you see the RD. I almost always take a list of quesitons.