In 2004 I had a RA factor of 124. I had, I thought, flu-like symptoms and was tired 24/7. Doctor sent me to a rheumatologist. I think I earned a Master’s Degree in Denial on that trip, as she found no indication that I had RA.
2007, same symptoms but now coupled with burning pain in shoulders, hips and buttocks. Can’t get out of bed without help some days, bent down for bottle of aspirin at the drug store and could not get up without help (Independence? Downward spiral) and can’t even open my car door without tearing up. Made my doctor give another RA test and now I am at 167. He gave me steroids to ease the pain. Denial at this point may not be my healthiest option.
My question is have any of you had a doctor tell you that you didn’t have RA and then discovered they were wrong? I have another appointment this week and have done my homework, or at least I think I have. My biggest fear is that it will be ignored until it’s too late. Please help me know if this is common so I can find another solution if need be.
It's fairly common for RA doctors not to commit to a diagnosis for some time. Some people are seronegative and it never shows up in their bloodwork. But if you don't get some action at this point, then it is time to get another opinion. You are right, you need to be treated. Your pain and function must also be taken into consideration and it is obviously that it isn't.Welcome Ladyfox!
glad you're here. Their are lots of folks here in your situation. Not me exactly; I was dx'ed the first day with negative blood work; which I guess I should feel fortunate about but it always keeps me wondering.
Stick around. Despite what you might have read upon opening a few post things seem weird around here. Guess it is at times.
Glad you're here though! Welcome.
Mmhmm she's right, I've always been sero-negative. What on earth would have happened to me if the docs had JUST listened to that? This ir your body and your health, and you deserve good treatment. How do you feel about a second opinion? Or do you feel that at least NOW he will treat you, and quickly!Funny, my primary doctor said the same thing. Told me lawsuits get them funky. "Get another opinon " if you don't get what you need, good advise. Trust me, I don't want RA, but if this is what it is I need to know so I can deal with it. I also know that having people around you that know the disease first hand and that have a postive outlook is important.
As for the postive outlook. I went on the web to learn about this. Grim reapers until I dug deeper. Thanks for being there. I don't ask for help often.
Hi LadyFox and welcome. I would strongly consider a second opinion if you don't get any answers at your appointment this week. I am sero-negative as my rheumy does not like to use the RA label for anything other than sero-positive, however, she is treating me with methotrexate and Plaquenil (two DMARDs). My family doc says I definitely have RA. Good Luck!Hi LadyFox,
Yes I had RA and was told that I did not for a year as I am sero-negative. That year costed me a lot so keep searching. It has now been over 2 years and I just recently got my RA under control as far as damage but not as far as pain levels.
Like the others, LadyFox, I'm seronegative. I was lucky to present with a LOT of symptoms in the beginning and get diagnosed right away. Not being diagnosed if you have RA is NOT a good thing. It's not just the pain - it's the joint damage you could be dealing with. Once you have it, it doesn't go away.Welcome to the board! Yes it is common for docs to wait on a diagnosis. It's the whole lawsuit thingie they have to worry about. I am not sure why you were told you did not have RA since you present with the symptoms and an RH factor. That is kinda weird. I would go for a 2nd opinion if it were me.
Keep us posted on how you are doing and what the doc says!
Hello Ladyfox,
I was diagnosed with RA recently and am sero-negative. My rheum kept saying it might be RA even though I didn't test for it, but wouldn't treat it. I did have a ESR of 80 so she put me on prednisone. Finally my neurologist became convinced I had vasculitis and referred me to another rheum. She diagnosed me on the first appt with RA and vasculitis. At first I wondered if she was right, but now that I know more it makes sense and I'm glad I am finally getting treatment after1-1/2 years. I would get a 2nd opinion and take care of yourself now to prevent damage.
Laker
I was RF negative and went to 3 gps, 3 rheumys and 4 surgeons and had 2 total knee replacements. 3 years LATER I finally found a gp and rheumy who decided I had RA
I might still have my knees if someone had used their brain.
My advice is to definitely get a second or third or fourth opinion until you know you have been given the right diagnosis
Pam
Welcome to the board, FoxyLady!
Seems you have gotten a lot of replies and stories of experience already. I have nothing to offer, except welcome to the board and hope to see you around and that you will keep us posted.
I now know what I must do in case I'm brushed off again. I, like you, can't wait for a 'maybe'. This trip around I'm scared of the damage not to mention the pain.
Thank you for helping me with this. I will let you know what I find out. Good or bad, it will at least be a start.
sero-negative means thats your blood work doesn't reflect the disease, yet your body shows it.Welcome LadyFox, i am also new to this board. No, infact my doctors all thought I did have RA, I was unwilling to admit it. Don't as me why, as MY grandmother had it badly, she died a horrible, painful death before all these drugs that make our lives livable came about. My GP didn't like the MTX for ages, but has finally come around to 'it works' for me, so okay. Doctors vary all over the map, so who knows what they are going to say. I have had two doctors in 20 years, thank goodness my current doctor bailed me out of a bad situation with the first one....she was a real nut. I hope you can find someone you trust.
good luck with all this it is very complicated,
sarah