Some of you know the drama I went though with my last new
doc (to sum it up, she was pretty bad). Well, tomorrow I am
driving 4 hours to see a new doc back in Charleston (staying
with the in-laws). He seems great on paper, does a lot of
research, publishes a lot, and my MIL has a friend whose
husband works in the practice. So I'm hoping everything goes
well. My only other insurance choice was to see a non-board
certified ortho here in GA, and that was definitely out. I guess
my problem is that the last doc made me doubt myself a lot,
even though I know I was right. My sed rate was never
elevated, even when I had to be hospitalized for intensive
physical therapy. I guess I wanted to know how many of you
still have normal sed rates during flares. I also wanted any
advice as to what to say....I don't want to be too pushy, but I
have been in unrelieved pain for about 5 months. I am taking
my list of symptoms and meds and they sent a new patient
packet that is very thorough. I was 10 when we started with my
peds rheumy, so I am a little rusty on how it all goes. Thanks for
any advice/input you have!
P.S. I also posted this on Sushi, in case it looks familiar to some
of you.
My sed was never elevated either but that doesn't mean you are not flaring or do not have RA. It is just one of the things they look at when they diagnose. It is very good that they sent you a packet to fill out before your first visit. It gives them a good history on you (in case you forget something at the visit) and it will also help to get insurance to pay for meds.
Your visit might involve more bloodwork, x-rays, range of motion tests, a discussion on symptons and what you have done to try and relieve them, and your med options.
Be pushy!!! You do not need to live with unrelieved pain. And if this doc is any good he will not let you live with unrelieved pain. Nothing completely takes the pain away, but there are options to make it so you can live as normal life as possible and not be in continuing pain all the time with no relief at all.
Good luck and I hope this doc is a good and works out for you!
Good luck tomorrow. My sed rate runs a little high, in the 50's, I think under 20 is desirable but my c-reactive protein level which is supposed to be more sensitive, comes back normal even though I have LOTS of visual swelling in my hands and feet. I've started tacking pictures of the swelling and inflammation in my eyes to have a record of it.
I guess I would be patient for the first part of the appt and see what they suggest. You should be familiar with the treatment options and have some idea of what meds you expect and if they don't recommend them, than by all means, get pushy! Only you know the amount of pain you live with everyday, its sometimes hard to convey that to doctors.
I don't even know what a sed-rate is. O.o and I effing KNOW I have JRA. Always have. I don't recal them ever finding anything in ANY of my blood work. Ever ever ever. So you're not alone! X-rays and visual diagnosis is all I've ever had. Good luck Sara!
<3
Katie
My sed rate has always been low... last test it was a 7, previous ones it came in around 4. Tell that to my hands and feet in the morning!This is off the subject, but what is Sushi? I have heard some say they posted something on Sushi and I don't know what it is.
Phatgirl2
rasushi is the forum that um...crunchy(? i think) started. I don't remember the addy for it.....PM crunchy, she'll give it to you :)You can have normal seds, CR, and RA Factors and still have RA.
I tested negative for years. I was referred by my GYN (of all people) to Stanford Arthritis Institute and after everything was said and done I still didn't have a diagnosis. 5 years later I was diagnosed when I had a severe flare that left me crippled and barely able to leave my home. Then my bloodwork was positive for RA and treatment was started. I went into remission (Doctor's term) and meds. tapered and stopped. I was fine for 6 years and then I flared into an even worse flare than the original one. I was homebound and that was over 2 years ago. I've since rebounded thanks to drugs and an aggressive RD. I'm getting around pretty good except for the damage from those six years of "remission" I truly wasn't in remission it was false remission. Damage was being done to my ankle, feet, wrist, fingers, and knees. Because I didn't have any pain I didn't go to the RD or have xrays. FOOLISH ME - I had active disease all those years. If I had continued seeing the RD and had xrays they would have seen the continual damage. So the answer to your question is yes you can be negative and have the disease. I should have known better because I'm a nurse but I didn't have any pain. Don't be fooled.
Thanks everyone! I know that I have RA, but it helps to know that there are others out there who never had it show up in their blood work. I just had a bad doc last time who made me feel like I was overreacting and nothing was wrong with me! I'm sure I won't be able to sleep tonight. I am nervous! But I've heard wonderful things about this doc, so I am sure he will be great.Sara,
I'm so glad to hear that your doctors appt went well. It seems like great doctors are half the battle.
Phatgirl2
Copyright ArthritisInsight.com