Hi all,
I'm new here. Hope you don't mind me posting. I'm having a few problems and am hoping that you could help out or make suggestions.
Ok, I'm 22, female and for the last 9 weeks my joimts have been very painful,and have been swollen for the last 7 weeks. It was a very sudden onset, 1 week after I had surgery so I thought I'd got a virus. However it's been gettting worse and worse. I'm affected in my feet, toes, ankles, knees, hips, shoulders, elbows, wrists and all the joints in my fingers. I'm not sure if my neck is affected as sometimes it hurts, sometimes not so could just be bad posture etc as it doesn't have swelling. The swelling is particuarly bad in elbos, knees and my hands. My hands look quite puffy, but there is no redness. I am much worse in mornings, get better during the day then bad in the evening again. My little fingers are now both bent at the middle knuckle. I'm not able to walk far and going up/down stairs is a nightmare due to pain in hips and knees.
Thing is, I'm negative for rheumatoid factor, and my sed rate was 16, and c-reative protein is 3. I've doen some research on the net and it looks pretty normal. The blood test was done 1 week after swelling appeared and the swelling is much worse now.
I'd really appreciate any opinions or advice. I'm seeing a rheumatolagist on 10th October, which seems a long way off. Do you think it could be RA,even though the blood tests don't go along with it?
Thank you so much for reading this.
Carys
-x-
Blood tests are only one sign of RA. I'm sero-negative. A lot of us are. What that means is, it doesn't show in our blood - yet. With the right treatment, it may never.Hi Carys,
Of course no one minds you posting. That's what this site is here for and that's what we're here for. It helps just to know you are not alone in the suffering.
I have A.S.(ankylosing spondylitis) Fibro & they now think seroegative RA. All of my tests come out normal except that I am HLA-B27+, which is a genetic marker they use to dx some rheumatic diseases. Even when I'm swollen & in mind crushing pain my tests results are in normal range. There are many like that. Hopefully your Rheumy is good. You can come here w/ questions & concerns about that too. There is a wealth of wisdom and plenty of experience here for you to tap into you.
October 10th is a long way off! when you are in bad condition & in need of help yesterday. I am not a doctor but it sure sounds like you have some form of arthritis or autoimmune disease. With that said, I welcome you to this board & hope that you will find some answers & comfort here. I am new to this site as well but not to the disease. I have been sick over 20 yrs. Took me 10 yrs. to get dxd.
Hang in there! Peace, Tam
Hi
I, too am sero-neg. Before I went to my wonderful doctor my husband would have to help me out of bed and dress me in the mornings. The medicine helps you live a more normal life. My doc did a bone scan, I guess this showed him more than anything that I have Ra, plus my father had RA in a very bad way.
Good Luck
I am a living example of a missed diagnosis because of a lack of rheumatoid factor in my blood tests. At one point, my rheumatologist said that "there is nothing rheumatologically wrong with me" and thus I sulked out wondering what the heck is wrong with me.
I had all the symptoms you describe (night sweats, swollen/painful joints, morning stiffness, extreme fatigue, etc) and they continued to get worse.
Now, I have permanent damage in some of my joints due to the months and months of swelling. After visiting the Cleveland Clinic, my hand joints were VERY noticably swelled and she recommended IMMEDIATE DMARD therapy. I went back to my rheumatologist at home and she really apologized for what happened in the past.
IN SHORT, I am not for pushing doctors to make an incorrect diagnosis but I definitely would not sit back and watch this happen. If this continues or, god forbid, gets worse, I would visit other rheumatologists for a second opinion. After all, doctors are human to and they make mistakes just like we do.
I pray for you
Chris
I too am sero-negative. All my tests came back normal, but yet I still have RA. Fortuately my doctor prescribed prednisone while I was going through all my tests and it helped me tremendously. The swelling went down and the pain. He started me on a DMARD right away after the tests came back even though they were normal. He said you have all the symptoms of RA, therefore, he concluded I had it over anything else. And he was right. A great doctor to be sure. I hope yours is as good. Finding a good doctor is an important part of the process of getting yourself back to a relatively normal life. Good luck to you.
Susan
Susan is right - get a good doctor. If your doctor discounts your problems, get another one. This is not something you can let go. At all. Your joints, your health, your future all depend on you getting this taken care of.I totally agree, sounds like ra. I was healthy until 3 years ago. We wanted to start a family and I had three unexplained miscarriages. Went to the fertility doc, did all the tests, started on hormones and injections and went down hill quickly.
My hands were the first to swell, they told me water retention due to the fertility treatments. Managed to get pregnant last fall and my eye flared, uveitis. I went on to lose the babies, identical twins at 3.5 months.
Right after that, my feet, knees and hips swelled and hurt. I was tired and felt sick all the time. The docs first told me that I was just depressed.
Couple of months later, they said serum negative ra and I started on placquenil. That was last January.
I'm still struggling. My sed rate isn't bad but higher than yours, its around 25 or so and my c reactive protein came back at 4. Now, they think I may have Crohn's instead because I also developed chronic diarrhea. Ive been on steroids for months and just started humira.
X-rays show bone loss already in my hands, feet and knees. Keep pressing the docs to treat you. If you can't see the rheumy any sooner, at least ask your regular doc to give you a med dose pack of steroids. Its a 6 or 7 day course of steroids and it will help the swelling and pain right away. Short term steroids are ok but long term causing big problems. They now know that quick and aggressive treatment is the key to preventing permanent damage.
Hi,
I know how you feel. I have very similar symptoms, although not as severe. My blood tests also came back normal, and although the symptoms are now spreading to my feet and knees my doctor refuses to diagnose this, or refer me. I have another appointment next week with a different doc to try and persuade them to do something. My boss has told me there is lots she can do for me at work to help, but i must have a written diagnosis in order for her to start the wheels in motion.
If I have any success I will let you know what information I have managed to gather. I share the same problem of being at the beck and call of the NHS and it can sometimes be difficult to get the results we need, so a good plan of attack is essential!
Lots of us are sero-negative but still have RA. Only 80% of all RA patients eventually test positive for rheumatoid factor that means 20% never do. To have the miseries for 2 months is enough. Go to your GP and ask for a ‘burst’ of prednisone. Short term use of steroids is OK.
With just a little luck this will fix your problem and you will get back to normal and never see the wicked RA beast again.
Don’t cancel your Rhuemy appt even if you feel perfect after the pred.
Susan All my tests have been in the normal range, too. When I started complaining about the pain getting to be unbearable again, my rhuemy did a CCP on me, and when I researched the test, I found out that it is a fairly new test that so far is used only on ra patients, that shows the dr. your pain level. I was a strong positive, so he gave me painpills to help, it hasn't helped much with my feet, but has everywhere else, or did for a month, anyway. Seems like I'm already getting immune to the painpills, but then, isn't that the way it goes, ha! He will see me in a week, says he may have to make changes in my meds in the future. Right now I take celebrex, metx, folic acid, preds and remicade for the ra, and I take evista, vitamins D and calcium, and Darvocet for everything else, Ha! This tuesday I get the exam to see how bad the glaucoma is that was detected 2 years ago, hopefully it hasn't gotten bad, a few of my meds can accelerate the problem. This is a great place to share info, I've asked my dr. more than once about info I've picked up on these boards, I think you'll like visiting here. Have a great day and a wonderful weekend!!!!!
I don't have the problem of having negative blood test results however
being in the UK, I was originally offered an appointment with a Rheumy
5 months after my symptoms began. This was far too long, I managed to
call my GP and he faxed the consultant and insisted I had an urgent
appointment, they got me in the next week.
Don't delay getting in to see the rheumy as if you do have RA which is left untreated you could damage your joints.
I hope for you you don't have it and it is just a virus but I would go
back to your GP and get him to get you an urgent referral, it is better
to be dxd quickly so you can start treatment. Has your Gp given you
voltarol or anything similar? i was on that until i was dxd which
helped slightly with the inflammation.
Lorna x
My blood test showed RA positive a couple years ago. I've been on
all the meds... feeling better, but had some real swelling in my
hands, feet and knee recently. My MD ordered Xrays of these
areas. The radiologist comment was no rheumatoid
arthritis.... so, when I went back to my reglar MD, she said... maybe
you didn't have RA.... Then my next appt with my rheumy said....
no.. you definitely have RA, but it's under control for now and still
stay on all the meds. Plus he indicated that I also have
fibromyalsia (which I thought was a category for Drs that didn't know
what you are suffering from)..
So, my question is, why would an Xray show no RA?
I'm new to this board too and I really find all your comments and
insights into the disease VERY VERY educational. I'm
learning alot. Thank you so much for being there for me.
Currently on 10 mgs pred., MTX 20 mgs., protonix, sulphasalazine 2000
mgs., folic acid, remicade infusions, elavil, fosamax .. think
that's all
Vicki
An x-ray can only show joint damage. And you don't have any. That's not the same as not having RA, and it's a good thing. It means your meds are working, and that your RA hasn't progressed. Joint damage is generally not reversible. You don't want it.
I view this as very positive, Vicki - it's the outcome everyone hopes for.
Thanks so much Fiona for the input!!!!
Now I won't complain too much about all those darn meds I'm on!!!
I must be working.... this is hope for everyone out
there!
Vicki
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