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Need Help Convincing Doctor of RA (Negative Blood Work)
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RAIsbell posted:
Well, in an eerie echo of many stories I read here, I had some idiot nurse cheerily tell me "well ya don't have RA, why are you upset?". Just because my blood panel is negative this woman who has never met me, heard my history, has any idea of my pain and debilitation, is qualified to to tell me I don't have RA?!? I am so tired of being told, "but you look good". I am dangerously underweight (I hurt too much to be interested in food), I am weak and fatigued, I am in serious and terrible pain in most major joints (hips, knees, shoulders) and some smaller ones (wrists,elbows, hands) to the point of being a hermit. But because that blood work was negative, this woman is writing me off.

My question is this, "How did you convince your Dr. (or their staff) to take you seriously?" It would be especially helpful if you had negative blood work at least initially, and still got treatment. I am aggressive about my health and treatment, and I have not been seriously ill before. If one more person suggests a psychiatrist, I will need the prison one, because I will commit whatever assault I can actually manage that day (probably exhaust myself with the thought of it before I had the chance to do anything)....

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How did you manage to be taken seriously about your pain/symptoms?
  • Changed doctors until someone caught the crucial bit of info...
  • Cried silently at home until symptoms got bad enough to test...
  • Threw a huge fit until they HAD to treat you (somehow).....
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Byroney_WebMD_Staff responded:
Dear RAIsbell,

Did you know 20-30% of the people who have RA Test Negative for it? RA is definitely a disease that requires aggressive treatment because you're trying to prevent permanent joint damage.

I'd strongly suggest another doctor and getting a second opinion. I'd also make sure you're seeing a rheumatologist, if you didn't see one already.

Write back and let us know how you're doing,

Byroney
 
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aagarrison responded:
I am so sorry to hear that no one seems to want to listen to you. I am an RA patient and a podiatrist. I see the medical world from both sides and I think I can help you.

I also have a neg RA factor, but have been symptomatic for 3 years. At first my rheumy thought I had a viral arthritic flare. But after 6 months of symptoms, she agreed it was something more. I was on sulfasalazine, plaquinel, prednisone and mobic and still having pain. She would still only call it "polyarthitis not otherwise specified". But, she was always willing to treat my symptoms and pain. Next I tried methotrexate. Now I am on methotrexate and humira. And, finally after I got a nodule did she agree to call it RA.

Part of my point is that the diagnosis doesnt matter as much as the treatment.

Now, from the other side. As practitioners, we see many patients who over exaggerate their symptoms to get medications. We are over worked and have insurance companies trying to dictate what we can do. Also, sometimes it is in your interest to not have a definitive diagnosis until the doc is absolutely sure -- the insurance companies can use it against you for future coverage, and by concentrating on only one possible diagnosis, we can miss other symptoms that mean something else is wrong.

My last piece of advice....don't stop trying to get them to listen. Make and keep your appointments. Cal to infrom the office of your symptoms. Keep a journal. ask for MRI (which is much more sensative to early changes than x ray). Don't give up.

amy
 
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Pollysue22 responded:
Hi Isbell,

If you cannot get your Rhumy to listen, maybe you should get a second opinion. I had a bad experience before I found the Rhumy I have now, he and his staff are wonderful, It is important that you begin treatment as soon as possible. Good luck ...

Susan
 
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RAIsbell responded:
Went to the Rheumatologist today. Ran another panel, and he prescribed naproxen and tramadol. He seems to think I am nuts, but I will persist.Maybe I am nuts, but that is completely unrelated to the pain and stiffness, odd fevers, psoriasis, and stomach issues. I will prevail, and I will figure this out. I am going to take his meds as directed, and meticulously journal all related info. I will keep you all posted. Thank you for your support and replies.
 
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dfbdar responded:
HI I had many problems for a number of years before being diagnosed with RA. My bloodwork would always come up negative while I showed signs of some sort of auto immune disease. I ran fevers pretty much daily. I had joint swelling, whole body pain, morning stiffness ect. I was miserable. I have a wonderful Doctor who decided to have me try celebrex which changed my life back then. It was like a miracle. It gave me my life back for a couple yrs. As my disease progressed my Doc sent me to a Rheumatologist who ran blood work again which came back yet again negative. By this time I was pacing the floors nightly crying my eyes out which what I thought was restless leg syndrome. I explained to my rhemy how I could sit or lie down without wigging out. No matter how tired I was I had to keep moving. Sounds bizzare doesnt it. He said that was bad inflammation not what people think is RLS. So he said I needed extrays since my bloodwork was coming back negative since certain people can have RA and have negative bloodwork. Sure enough the exrays came back and rhemy said I had bone damage in my feet which was only cause by RA. So I was diagnosed with RA. It only took 13 yrs. I had been to 3 other rhemies over the years including one at Mayo clinic but none of them ever did the exrays. Go figure.I also have crohns disease which took 27 yrs to diagnose. When I was 19 i was having severe stomach pain which docs thought was my appendicitis. They went in and it was normal, but the surgeon says thickened shiney 9" of intestine which he said was crohns disease. He didnt take a biopsey since he said seeing it first hand was the best diagnosis. This was a surgeon from Iowa. When I moved back to illinois I couldnt get any Gastro Doctor or any other Doctor for that matter to believe my story so they would do they regular colonoscopies and down the throat test and they would come back negative.I told them that the surgeon saw it in my small intestine but they would just diagnose me with irritable bowel. How I suffered with the most horrible stomach attacks for 27 years. 4 to 5 nights a weeks I would be on the floor sweating through my clothes or 6-10 hrs. At times I wanted to die. While this was going on the RA symptoms were appearing. When I got diagnosed with RA I told my husband That I didnt know how I was going to be able to deal with the pain of both these diseases. But as I started my RA meds a funny thing happened my stomach got better. I was on steroids and sufasalazine which are two meds for RA and they treat crohns as well. I couldnt expain it at the time but as my RA pain was getting worse my stomach was getting better. This went on for 3 years. Then my stomach started acting up again and I was getting migraines 5 times a week, and my back and feet were so bad I could hardly walk. Needless to say I ended up in the hospital to control my migraines and figure out my stomach and back problems. There was a new test now which u swallow a pill with a camera in it to see your stomach,intestines and colon. It marked the first time doctors could see in a persons small intestine. Guess what,,,, I had crohns disease in my small intestine. I Now had 2 autoimmune diseases. I also had ct scans and extrays of my back done and it came back that I have a herniated disc with spinal stenosis. I was so completely angry at all the doctors that didnt believe I had crohns disease and just treated me for irritable bowel all those years. I had suffered with so much pain which could have been helped. I guess the moral to my story here is,, dont give up,,, keep at the doctors if you know something isnt right. I had two diseases which took forever to diagnose. They dont always show themselves right away. So ask for those exrays on your hands elbows wrists knees and feet. They just might show something the bloodtests arent showing. If anyone wants to talk to me about this feel free to email me at dfb011164@aol
Dar
 
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crkclaire responded:
I just posted on the Sjogren board but this post really touched a nerve in me.

I have had similar experience. Am wondering if I should change rheumatologists or keep more details of the pain/stiffness/swelling/fatigue in a journal and toss it at current one!

My blood work has been negative (eye specialist spotted dry eye/sjogrens 15 yr ago but RF test always neg so didn't pursue) then 2 yr ago got hand symptoms really bad in joints and also a trigger finger. Saw a physiotherapist (very helpful!) weekly to biweekly and she suggested I see rheum. as the joints affected suggest RA.

Rheumatologist told me 10 mon ago that my hand/chest xrays "normal", blood work all normal and that I absolutley do NOT have sjogrens despite eyes so dry that i get spontaneous eye infections and my eye doctor has me on hourly eye drops and nightly ointment(mineral oil/petroleum jelly mix). I have recently had to start using the ointment during the day at work as the drops and gel evaporate instantly in my eyes.

My hands hurt constantly(aleve takes the edge off), the fatigue is at time unbearable and my eyes are red and sore....but I look "good" so how can I be sick? LOL....

I am at my wits end.....rheum gave me a requisition last time I was in to see him and said to go get blood drawn the next time I was in a "flare"(pain wasn't bad at my appt time....typical)....will that make a difference? It takes months to get an appt with him......

Thanks for the opportunity to vent, am so frustrated.......
 
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Strawberryfie responded:
I read your post and wanted to put your mind at ease. I just went to a Rheumatologist and my blood work was negative and she still dx me with RA because of the swelling and xray and of all the other pain that I have. I would suggest going to another doctor. My problem is not overweight or underweight but finding something to help manage the pain. All the meds that I have tried so far make me very sick. I am thinking about trying medical marajuana. What are your thoughts on that? I am certain that will not make me sick as I have participated in that due to my nausea. Let me know your thoughts. I am wondering if RA is a qualifier for a medical card. I have other qualifiers though.
 
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Byroney_WebMD_Staff replied to crkclaire's response:
Dear Crkclaire,

I would definitely suggest getting a second opinion. Like several other members have mentioned, they had to get second (even third) opinions to get properly diagnosed and treated. The longer you go without proper treatment, the more damage can take place if it turns out you have RA and Sjogrens.

Please feel free to vent any time. We're here through good times and bad. Hopefully good times are in your near future!

Byroney
 
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MEMACAT replied to RAIsbell's response:
Hi Isbell I was misdiagnosed with LUPUS then I got a second opion with a RA doctor and they told me I had RA after 4 years of treating it I started get Neg panels back and they tried to tell me I did not have RA then did it again and there it was again so I see how you would be upset just stay on them about it. I take Methotrexate and Orencia infusions it helps for a least 2 to 3 weeks of the month lol I personaly I think tramadol is is a waste of time and money but it may help you it is for flare ups by that time your in a lot of pain take prilocec for your stomach it helps.Good Luck you are in my prays
 
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DebWagner responded:
I was originally diagnosed with fibromyalgia, but two different doctors did NOT first of all run test to look for RA, Lupus, or MS, which they should have done to begin with! Anyway, I moved out of state and my new doctor recommended these tests, which showed positive for RA. I now have an appointment with a rheumatologist. Sometimes we just have to change doctors and eventually find the right one who believes you and is willing to help get to the cause of our pain and problems. Good luck!
 
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bsygrlx2 responded:
I am writing as a frustrated mother to all of you who are in severe pain and can't get anyone to listen. My daughter Katie is 21 and was labeled a "seeker" for trying to get pain meds. So that made everything worse. We saw a Doctor who FINALLY ran a CRP ( a sophisticated level of bloodwork most Docs won't run due to the cost if they aren't sure of diagnosis!!) They could have done that two years ago and we may have kept the arthritis at bay!! Makes me furious. A normal protein reading is below 1.0 and Katies is 35.9
It indicates extremely high levels of inflamation in the body. I pray this may help some of you who are just as frustrated.
 
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MamaHelen replied to Byroney_WebMD_Staff's response:
that's really good advice...getting another doctor...i did that for another problem and got the treatment I needed...i'm fine now)...except for the arthritis...i too test negative, although i'll see new test results tomorrow...am in a bad flare right now...but thankfully I have a rheumatologist who recognizes that some people test negative...he believes me when I tell him I'm in pain and he can see the swollen joints.

some of the time, I have downloaded and printed off information from WebMD or a site like that...it has to be a well respected reputable site...to take in when I think a doctor is going to write me off...it's helped alot and now most of the time I get better results...I am assertive and go in armed with information.
 
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An_215793 replied to Byroney_WebMD_Staff's response:
  • What about the spondyloarthropathies which are seronegetive?
  • Has anyone tested you for sacrilitis and enthesitis?
 
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lrcjvl replied to dfbdar's response:
  1. spondylarthropathies are seronegetive and often occur with inflammatory bowel disease, please check into this


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