Thank you for all your support and I wish all of you the best. I am relieved to not have RA but I am very frustrated that I won't feel better soon. Maybe this is what happens when you approach 40...
Best Wishes,
Karen
Karen; there are many here that have negative blood work. I would be one of them, and there is no doubt in my doctors mind that I still have RA. Do you have the other criteria? Some doctors will diagnosis it a lot quicker than other doctors will. My doctor diagnosised me the first visit, but for many especially those with negative blood work it takes a little longer to get a proper diagnosis. Look under the useful links section at the criteria used to diagnosis it. You do not have to have all seven I believe it is.
I'm not trying to say you do have RA...but blood work is not the only factor.
I hope you find some answers soon. I can only imagine how frusrating this must all be for you.
Best of luck to you. You don't have to leave us.
Lovie
HEY WAIT!!!!!
Before u just leave us let me ask u: Have u ever been diagnosed with or tested for fibromyalgia. Its a condition that acts very much like RA, the difference being it has more to do with the muscles than joints. You still have the great amount of pain but all over the body, fatigue, and stiffnes, as well as memory loss, depression, numbnes and tingiling esp in the hands and feet, muscle weakness, dizziness, sore spots on the body that are tender to touch(even with you finger) headaches and trouble sleeping. Fibromyalgia does not show up in blood work, as a matter of fact usually all of the test the doc does comes back completly normal making it seem like there's really nothing wrong with you and you're just making all of these symptoms up (sound like a pro at this yet
Dont give up that easily, that's exactly what the docs want you to do. If it is not a dxs that they can simply point to from a positive blood test or confirm with an x-ray they just feel like you're wasting their valuable time. Most of them are not willing to go the extra mile to find out what is truly wrong with you, they just basically want money. As you can see I've been down the same road a looooooooooong time. I know its frustrating and you feel like just throwing up you hand and say the H#*& with it. But keep fighting hon, this is your body and your pain. If this doc does not want to help u, keep searching until you find one that does!!!!! It took me more than ten years to get correctly dxs and even then I still didnt get properly treated for five more years!
Bottom line is we dont want you to leave, and certainly dont want you to suffer needlessly. You DESERVE to know exactly what is wrong with you and get treatment for it so that you can feel better. Do as much research as you can and keep yourself informed. Find a doc willing to take the time to listen to you. Above all keep coming here as much as you need to. You may not have RA, but you could have 1 of the hudreds of other forms of Arthritis/Arthritis related conditions, it could also be Chronic Fatigue, which also acts much like arthrits.
PLEEEEEEASE STAY WITH US! I have found invaluable support from the kind folks here and Im sure you will too!
OK I'LL STOP PREACHING NOW!
Shawnie
Now Karen,
Your're not going anywhere!! The only place you are going is to tell that doc where to get off
Please don't leave us, listen to Lovey, Shawnie (and there are many others too) that have negative blood results, you belong here. It just may take you longer to get the actual diagnosis whatever it maybe, but I can say for sure you're right where you belong.....here with friends that understand.
Lots and Lots of
Pam
Exactly what they said! I'm one of those sero-negative people. 21 years and counting at that! My labs have never shown anything to be wrong with me.Don't go, trust me the Dr.'s can be wrong.....looks like everyone here knows their Rheumatoid and has done their homework and they are correct.
If you give up, you will never ever get better. I seem to give up at least once or twice a year...it is the disease... keep going to Dr.'s until you find the one Dr. that knows you and knows Rheumatoid tell them a negative test result is not good enough for you cause there are other tests to help find what the problem is. There are too many scientists out there trying to make our lives easier to live with this disease....let them. Keep searching.
Hey Karen,
My bloodwork too is negative for lupus and RA. My Rhuimetoligist is certain I have RA. He says it doen't always show up in the blood...check your symptoms. I was put on Prednisone and it helped I go off of it and I flare up again. I am begining my third week on Arava and am starting to feel a difference.
You know the pain is real....Shawnie is 100% correct. If MD's can't diagnose you with a book, blood work or xray they can't treat you and won't. It slows down the "herding factor" the "gettem' in and gettem' out theory" if they have to spend more than five minutes with you. It's all about the money with these guys.....There are good MD's out there......ask DR. QUACK if he will refer you to a Rhuimetoligist/ (I must check my spelling I know I'm not spelling that right)
Don't give up!
Feel better,
KAT
Hey there.I just got my blood work back too and it was negative.Even though I show so many signs of something being wrong with me.i was checked for fybro. a few years ago and I had no pain in any of the pressure points.I have been checked for lupus twice and now RA.I don't know what is wrong with me.I hate to think I have to live this way.I should have went to the dr. when I was at my sickiest.I am doing all I can to prevent another "flare".I am staying out of the sun at the hottest part of the day incase it is lupus,I cut back on my workout routine(no more inner and outer thigh work,hurts so much),I still fight the nausea and fatigue but it is better.Time will tell.It would be different if this was the first 2 times this has happened but it's not.I put off going to the dr. just because they can never tell me whats wrong with me.i just knew the blood work would show something .I have really felt bad.I will keep alternating my tylenol for arthrtis and motrin to help with some of the pain.Gotta push on.
Best of luck to you,
Sheila
Another 'seronegativer' (please stay with us for support,you just need the right doctor,I too am sero-negative,as like most of us are.hang in there relief might be right around the corner.
Better yet where do you live,maybe one of us live around you,and could recommend you to a doctor,hang in there
My tests were negative for all but the ANA & HLA-B27, which apparently means I was 'predisposed' to this autoimmune problem when I developed CDIF(bacterial infection) from an antibiotic I took in December! All she can tell me is that it is an "unspecified spondyarthropathy". I cried most of the day...I guess grieving - less than 6months ago I was a 45yr old ACTIVE mother & muralist....and quite the party goer! I have a 16yr old & a 12 yr old(both girls) & have felt tremendous guilt for being "sick", but sick nonetheless- very much in pain...ALLOVER! I would love to hear from some others who understand this....night.
Does anyone feel this way or am I being a melodramatic whiner? Hey Karen, I too thought I was losing my mind and maybe thought I was just lazy and that's why my bones ached. What were your numbers for the RA test? My test said neg., but my ortho looked at me and showed me the numbers and I'm so close to being positive, he gave me the news right then and there. I have my first app. w/ the RA doc this friday. This was my 4th test and it turns out, I should have started seeing a specialist awhile ago. Like a lot of people out there, I didn't even consider the possibility of a chronic condition. I thought I just had a hip replacement in my future and my hand was doing this wierd thing I need to get fixed. I don't know why other MD's didn't show me that my numbers in my blood work had been leaning toward the positive side, but I do know that if you aren't pro-active, your just plain screwed. Just because an MD is speaking, doesn't mean they are the "end all". Your pain is your pain. Push until you find out what's the problem. Take good care Karen. P.S. This web site needs a chat room. I'm just sayin' it would be great. Peace everyone. Don't leave! I am negative too (elevated ESR). I have been told I have Non-specific joint pain (whatever that is supposed to be). But I am going back to the rheumatologist until they can tell me specifically what is wrong with me and how I can treat it. Sometimes I feel like an overweight, depressive hypochondriac. But everyone on the board still listens to me rant. I may or may not have RA....that remains to be seen, but I still need to here from other people with joint problems or I will never make any sense with what is going on with my body. Niki
Susan Lulubele; Lots of us here take MTX. I personally take MTX & Humira and I live a very active life. I have two children of my own; ages 11 & 15 and two stepsons ages 7 & 8. Your life is not over. With proper medications you can continue to live a happy, active lifestyle. Good Luck to you. Lovie Thanks everyone. I did speak to my PA at the Rhuematologist's office and she explained that the bloodwork just made the diagnosis more difficult. She said that I definitely have some type of Inflammatory Arthritis, she just doesn't know yet whether it is viral or chronic. I am now a W&S patient (wait and see
I will stick around for some support and advice. Thanks for letting me know I'm not crazy. Karen Lovie...thanks for your words of encouragement! You give me much hope! I have been so frustrated that my body has turned on me & I'm not ready take up permanent residence in the recliner! I have a splitting headache but I suppose that will go away in a bit after I adjust to the MTX. Now if I can just get my 2 darlings to quit fighting...
Lulu Just don't stay in that recliner too long Lulu. The longer you sit...the stiffer your body will get. Hopefully the headaches will pass soon. I went through a spell there where I had them alot while adjusting to a Humira increase; but it passed pretty quickly. Hope you're feeling better soon. Lovie Zakatak-Karen....your situation sounds like mine -was your sed rate high? Did the pain rspond well to prednisone? Mine did but I stopped as well....not a good long term drug to be on! My rheum. told me I could take 800mg of Ibuprophen 3x a day but also to take Prilosec everyday. I also take 2 Darvocet 100's 3x a day as well ! It sucks to be on this much medicine & still be in pain but we have to hang in there -I strongly believe He won't give me more than I can handle.....as painful as may be
Lulu On the other end of the spectrum, my rheumatoid factor and sed rate were so high the first time I saw him, the rheumy said he had no idea how I walked in there under my own power. He'd never seen numbers that high. He could see the pain I was in. But all these messages from the seronegative folks lead me to say I so agree with Monk regarding being proactive--here's why: Four years ago, I had some weird things happen, and did a lot of research on my symptoms. I suspected multiple sclerosis. The neurologist did a zillion tests, all irrelevant and negative, but when I suggested he check me for MS, he acted like I was an idiot. You see, I was 52 at the time, and "don't you know that it strikes people when they're in their 20s and 30s?" Well, to make a long story short, I got fed up with him and took my MRI films to another neurologist, and after looking at them, he immediately ordered more tests necessary for a proper diagnosis--among them, a spinal tap and cervical spine MRI. The result? Definite MS. I was so angry and disgusted with the first neurologist for wasting almost a year of my time with untreated MS and for missing very obvious red flags I won't list here, I wrote to the State Medical Board to report him for blatent disregard for a patient's stated symptoms and history, based on something so stupid as age. It didn't do any good, except to make me feel better. But now to the point--You are the boss. You pay the doctor. He works for you. He is not God. He's allowed to make minor mistakes, but he is not allowed not to listen to you and strongly consider your instincts. You've got to hang in there and fight for whatever it takes to feel better. Your quality of life depends on it, doesn't it? Take care, Karen. And by the way, I'll bet your kids get it. Even more than grown-ups. I think kids are far more instinctive than we give them credit for. Take care. Just came to add my two pennies worth of advice. I am also a seronegative RA-er (if that is a word!) who was told in 1998 by my first rheum that I had "unspecified connective tissue disease" and he wasn't sure what, but that he would treat it anyway. I am sooo grateful to him. Even tho insurance made me leave him in 2000, I found another great rheum who did finally diagnose me w/RA. Lulabelle, I was started on MTX in March that next year and it enabled me to dance at my dtr's wedding. This is not to say that my RA pain was completely handled by it, but it helped considerably. When my middle knuckles were so painful that I was so tempted to use the office paper cutter to put me out of my misery, I knew that I needed better meds. That was when I got the MTX. I have had ups and downs and flares, but for the most part I have done well just so long as I keep active and take meds on schedule. Keep following up with your doc and (I repeat) stay off the reclinder except for short rests which do help. I find that if I overdo it because my joints allow it, then I pay later with terrible fatigue and pain. Hope this was helpful.......I do walk 30 min daily on my treadmill or outdoors if the humidity allows it. My doc suggested walking on level ground to keep from aggravating knee pain. Hey Karen, Im glad you at least know now that you are dealing w/ some form of arthritis tho you dont have a name for it yet. And you can also take a little comfort in knowing that someone is willing to work to help you come to a definte conclusion about what type your dealing with. I know its hard being a wait and see patient, but as long as you stay with us on the boards we can help you through your wating period. (lets hope its a short one too!!!) And to Lulubele havent welcomed u yet. Glad u found us, and sorry about your dxs. At least you know your not alone now. Take care Shawnie
GLAD YOU DECIDED TO STAY!! WHEN
I FIRST WENT TO THE RHEUMATOLOGIST MY
BLOOD WORK WAS ALL 'NEGATIVE' EXCEPT FOR A
HIGH SED RATE. BUT HE DIAGNOSED ME WITH
RA BASED ON THAT AND MY OTHER SYMPTOMS.
ON ONE OF MY NEXT FOLLOW UP VISITS HE SAID
THAT A CCP MARKER SHOWED UP. SO I KNOW
THAT THE BLOOD WORK IS NOT THE ONLY
REQUIREMENT FOR DIAGNOSIS. GLAD YOUR
STILL HERE.
TARA L
hey karen, you are not alone i also am seronegative for ra, but recently diagnosed with psoratric arthritis and enthesopathy. its a very painful disease with swollen joints and tendon and ligament pain also. ive tried so many things already all allergic to by the way including enbrel, remecade, arava, sulfasalazine. now im going to try humira, find yourself another dr. that will listen to you, i have found when my dr. puts me on high doses of steroids i have relief but when i wean down the pain and stiffness gets worse just hang in there and know yuou are not alone
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