I am writing because I am almost postive I have RA but my tests are coming back negative. Let me give you some history. I am 30 and I got a grave MRSA staph infection in my eye about a year ago when I was 6 mos pregnant. Since then I have had about 5 surgeries, a number of infections and have had my eye removed. I mention that only because I believe the infection prompted the RA. Anyway, about 4 months ago my hands started aching at night and in the morning when I woke up. They would be much better about and hour or two after getting up. They got worse and worse. Then they started waking me up at night hurting so badly. A couple months ago, I got out of bad and tried to stand up and couldn't walk because my feet hurt so bad. My knees started giving out and I couldn't walk steps. Then my shoulders started. This week my thumbs started locking in placed for the firt hour of each morning and I have had fevers for the past two days. I went to Rheum and she ran tests but - for RH and Xray showed no joint damage in hands. The ESR and one other was fine also. I don't have any outward redness or swelling. So, am I just too early to show these things yet? What am I to expect next and how long will it take. I have 2 children 5 and under. I have chronic pain and already take a fentanyl patch and percocent and NSAIDS for my eye pain. So all this pain is on top of these narcs!!!Yikes! Well, you're not alone in thinking that an infection triggered your RA. While it's not a popular theory among the docs, you will find it talked about a lot on forums and websites. So...I dunno, it's hard to say, ya know? You pain descrip. is right on T with RA. You don't have to show any signs of damage yet, I mean it sounds like it just started. You blood work, too, doesn't have to show it. I have had JRA since like..almost birth, and I don't believe that I've tested positive for anything. What tests DID your rheumy do? ANA? Sed Rate?
Sadly, for people who don't blood test, it can take much longer to get a firm diagnosis. You say you are taking NSAIDs for the eye pain - that makes me wonder if the reason that you don't have visible swelling, and yet you do have the pain, is because the NSAIDs are keeping your inflammation down, but not stopping the disease from doing damage (which may not be visible just yet) That may be something to ask your rheumy about.
I hope you get some help soon!! Let us know!
Has your RD tested you for Lymes Disease? And did he/she place you on
medications for the RA?
Sounds like early RA. Did they test for Anti-CCP? From www.LabTestsOnline.org:
"CCP can be useful in diagnosing early RA. An elevated CCP can be found in a significant number of patients who have a negative RF, the classic test for RA, and therefore can help to make a diagnosis. According to the American College of Rheumatology, CCP antibodies may be detected in about 50-60% of patients with early RA (as early as 3-6 months after the beginning of symptoms). Early detection and diagnosis of RA allows doctors to begin aggressive treatment of the condition, minimizing the associated complications and tissue damage."
Autoimmune diseases start with the genetic predisposition that's then set off by an environmetal trigger. After such massive stress, pregnancy and birth, not to mention just the MRSA infection itself, it wouldn't be surprising to see an autoimmune disorder surface. I mean, you had all the triggers! This snippet is from John Hopkins Autoimmune Disease Research Center:
"Toward a collective approach to autoimmune diseases. Another problem is that diseases of autoimmune origin are allocated to different medical specialties based on the organ system immediately affected. Autoimmune diseases of the blood, for example, are treated by hematologists, those of the nervous system by neurologists, those of the endocrine system by endocrinologists and those of the joints and muscles by rheumatologists. This compartmentalization has hampered communication among physicians and scientists interested in autoimmune diseases. Yet the basic principles governing one autoimmune disease are applicable to others. Common threads uniting the autoimmune diseases are the presence of an autoimmune response based on cumulative genetic risk factors, combined with an environmental contribution (infectious, chemical, physical, or other). Equally important, innovative treatments applied to one autoimmune disease may be useful in others. To seize the new opportunities for moving research and treatment forward, leading investigators are calling for a collective approach to the autoimmune diseases. The answer has been the creation of the Johns Hopkins Autoimmune Disease Research Center."
Whatever it is, it certainly sounds like a severe onset!
Thank you so much for your responses! I will check more into Hopkins -- I actually live about an hour and a half from there. I am military and my doctors tend to suck sometimes.
I am so glad I found this sight. I often wonder how this one eyed chick that can't walk is going to take care of two small children (lol)...
Heather
Brightha and Chrise (and anybody else interested
If you think your RA is started by any type of infection you might look into the Antibiotic Protocol (AP). I was sure my PRA was started by dental work with an abscessed tooth (infection) and that's how I got my disease under control.
I have this theory that there is some sort of cascade effect in triggering these diseases in our bodies. Something is the straw that broke the camels back and our body just can't fight off whatever that last straw was. For Brightha, the baby, the eye infection etc sounds like a cascade to me. Again, this is only my theory - your milage may vary.
Chrise,
My OB/GYN told me that if we have a virus then ABX will not help - until I found some research showing treating severe early onset RA in Belgium with AZT 'cured' a 19 year old boy. I had spent a couple of months going from doc to doc trying to figure out what happened to me and an infectious disease doc said I had recently been exposed to the Parvo virus and shingles was also a possiibility. Going back to my wacky cascade theory - what if what we are going thru is that 'last straw' was too much? A couple things going on at the same time and the bodies defenses cannot handle it? Like it could if it were one at a time?
I am not trying to push this - but I'd look into AP if I were you. It's the only thing that made sense to me. Most of the traditional meds are immunesuppressants. Not something I was willing to do when I knew my disease was started by an infection of some kind.
And when I hit remission on AP - I intend to do a course of antivirals. Just to be on the safe side.
Pip
P.S. Katie? This would apply to you too. Sorry - not trying to push - just AP saved my life.
Oh no pip, I know. :) I think you're one of the great poster childs for when AP therapy works! :) Before I had heard from so many people on this site about it, I thought it was a crock. But you know, after hearing so many people have success with it - it's just like...god, why not give it a try? This disease is so bad for some people, I just don't see why you can't try, ya know?I think a lot of us need a new doc - especially Brightha. These guys have their set check lists and anything not on it (ie. swelling and redness) and they don't know how to handle it. My friends are all teasing me that I should go back to school to be an MD - LOL)
Seriously, Katie, I'm really worried about how these docs don't pay attention to the infection connection. This RA summit has me in a spin - if you can believe it.
Pip
P.S. If you ever decide to do AP - I'll hold your hand and help you get through it. We could be 'RA buddies'.
I had all neg labs and x-rays at first and no real swelling but have a great doc and she dx'd RA then got me started on the meds. Now though labs are still neg, except ANA, I have swelling, redness and it shows up on x-rays. I agree with getting a new doc. RA etc. are not always obvious early on.I am not a Dr. but I know someone that had the same situation you are having. They tried OmegaXL, and had great resultes. You can order FREE BOTTLE, just pay for shipping. www.painfree4u.com