I got my lab results yesterday. My sed rate is 106! Normal is below 20! 3 months ago it was 45. It's been elevated for 14 yrs mainly stays in the 60 range & only once about a year ago it was 114! That's the highest I've seen it! My rheumatoid factor was 17 & they said according to their lab that result is positive but low. CRP is normal. My WBCs are normal too. My epstein barr titers are 715 which is very high but I don't even remember when I had that virus! Strange! They want me to have a chest xray to see if there's anything pulmonary wise that can be causing my high sed rate. I don't understand this because I have no symptoms with my lungs! They also said to make sure I'm up to date on all my cancer screenings, which I am so I'm guessing they're looking for cancer in my lungs? I don't smoke nor have I ever smoked. I have "nodules" on my knuckles of my right hand & on my pinky finger of my left but the xrays of my hands were negative. So what are these bumps on my knuckles? They're red and painful! So that's where I stand now. My follw up appt with the rheumatologist is in about 2 1/2 weeks & I need to get the CXR before that. Any one have any ideas what all this means?
Hi Gail and welcome, if I haven't yet said "hello." (I'm sorry, memory is so bad these days!)
People can get cancer and COPD (chronic obstructive pulmonary disease) from second hand smoke, so you could get it from your home or work environment, even if you aren't the smoker. So your doc might want to check to make sure you don't have either illness. TB might be another one he might be checking on. You'd be surprised to know that it's making a resurgence.
I don't have an answer for the other matters. I surely wish I did! But I'm sure someone else on here can answer your questions. If not, you should call your doctor and ask for some clarification. You have every right to know what's up with your medical situation.
It would seem to me that the knuckles plus the positive RA test would indicate that you have RA but I'm not a doctor so can't say. It sounds like you have several possible aggravating factors, such as possible RA and Epstein Barr virus. I don't know if it's possible to have EBV without knowing it. A quick Google search found this explanation:
The Epstein-Barr virus, also called EBV, is an extremely common virus that infects most people at one time or another during their lifetimes. Epstein-Barr virus infection generally causes a minor cold-like or flu-like illness, but, in some cases, there may be no symptoms of infection. http://www.localhealth.com/article/epstein-barr-virus
So I guess you could have been ill with it without realizing it. At this point, it sounds like you need more clarification from your doctor.
Good luck with this and let us know how you've made out.
Hi Gail!
Sorry you are going through all of this! Firstly, I am not one of the many nurses on here, but will tell you that I have Psoriatic arthritis, never had psoriasis but all of my grandkids do, however I do have the pitted fingernails, and that was how I was finally diagnosed. The type I have is Spondylitis, though I know this is a systemic disease, the problem area is my spine, and my knuckles are fairly normal.
My Phlebotomist also has PsA and her hands are just as you describe yours, (they look like the hands of someone with RA) though her blood work has NEVER given any indication of autoimmune. We both go to the same Rheumatologist, (also a Univ Prof) who tells me that PsA is the most prevalent autoimmune disease for this area. I'm about 70 miles west of Wash DC.
I am by no means attempting to diagnose you, it's just something to be considered.
http://www.webmd.com/rheumatoid-arthritis/guide/rheumatoid-nohttp://www.assh.org/Public/HandConditions/Documents/PsoriaticArthri...
duleshttp://www.healthcentral.com/osteoarthritis/h/degenerative-arthriti...
http://www.rightdiagnosis.com/sym/nodules_on_the_joints_of_the_hand...
I hope that these links are of help to you. I do not understand the pulmonary concern. We do have an Internal Medicine Physician's Assistant as a member. She is not on often at present, but I will leave her a message and see if she would care to comment! Our moderator dee is also an RN, hopefully she will respond!
As far as the varying results of your blood work, the first autoimmune disease I was extensively tested for was Sjogren's Syndrome. The first several were totally normal, then there was a false positive, then the results were literally 'off the charts high'. So my GP waited several months, retested, and again, off the charts high. I do not understand how these test results can jump around like this!
I hope that you are able to get some solid answers, and substantial treatment and relief!
Wishing you well,
SK
Thanks Petunia Girl!
Yes I realize about getting cancer from second hand smoke but no one in my household or immediate family are smokers & I have always avoided being around others when they are smoking because it will give me a headache! And I don't have TB, I get a TB test every year at work. But I'll get the chest xray anyways. I read that people with a sed rate over 100 can have some kind of cancer so I guess theyre making sure I don't. They told me because my CRP & ANA are negative they're thinking the RF is a false-positive & that I don't have RA! But that came from the MA not the doctor so I'll know more when I have my appt & can talk to her. It's very frustrating to have a sed rate that's been elevated so long with NO ANSWERS!! But thanks for your reply! Much appreciated! :)
Just like everything else with fibro - no answers! And test results that show nothing wrong! So maybe RA behaves in the same manner?
Thankfully your next appt is in 2 1/2 weeks, not months! I can see why you're so frustrated with such contradictory info being lobbed at you. Let's hope that your chest x-ray is clear and you can put that worry to bed. Good luck with this, Gail! You surely are stoic facing these different possible illnesses and I admire your strong back bone. Just keep the fortitude up until you walk out of the doctor's door in 2 1/2 weeks.
So you take Plaquenil? My rheumatologist did mention if she thinks I have RA or osteoarthritis she would first try me on that. I wonder if its helped anyone's sed rate to decrease? & how well does it help your pain? Right now I'm on tramadol for mild/moderate pain & oxycodone for severe pain.
Interesting!
Hi Gail,
Results like these can be very confusing. The Sed Rate alone basically just says you have inflammation somewhere in your body. By doing the CRP, they are trying to pinpoint the location. The ANA will determine if you might have an autoimmune disorder.
A Rheumatoid Factor is usually considered normal when it's under 60, but your lab may have developed their own testing procedures. I think it definitely sounds like you've got something going on with your hands, but red, painful nodules can be caused by many things, the most common is Osteoarthritis. An x-ray wouldn't show Rheumatoid Arthritis if your symptoms are new, because RA is a connective tissue disorder, and x-rays can't see your soft tissue. Only when it starts to advance and the connective tissue starts to affect the joints will it show up on x-rays.
Having only your Sed Rate elevated could mean several things. It could be that your other tests were seronegative results, or it could point to numerous other issues from an autoimmune disorder, to cancer, thyroid, or kidney disease, or to the recently recognized 'inflammatory diseases' which includes..... Fibromyalgia!
The Epstein Barr virus can be related to all of this-it's known to trigger autoimmune disorders. Do you remember having mono as a kid, or any kind of virus? If you did, the numbers can stay elevated for the rest of your life. I don't know the reference ranges, but the number will tell you whether it's an active or past infection, depending on which tests were done.
By ordering a chest x-ray it doesn't mean they think you have cancer, they are also looking for infection and inflammation in your lungs and your heart, and most likely to get a baseline picture so they have something to compare to in the future.
So don't panic, and keep us posted!
Renieā„
Whew! That was all a mouthful, I have to throw a disclaimer in here:
DISCLAIMER:
I am not a medical professional nor have medical training, this is only my experience. I was an office manager for a Rheumatologist for many years, and these are things that I learned under him.
Only a doctor can advise you on your health, and all medical concerns should always be referred to them. Never rely on things that you hear or read, the only way to get safe, accurate information is by a thorough examination by your physician.
THANK YOU FOR YOUR REPLY. I DON'T REMEMBER HAVING MONO AS A KID OR AT ANYTIME. WHEN THE DOCTOR SAW HOW HIGH MY EBV titers were HE said I just had a very bad case of MONO! But I don't remember that & I asked my mom about it too& she didn't recall unless I thought I had the flu at the time & it was really MONO?
I just got some new vitamins this week from a doctor I see who specializes in hormones mainly but he had the vitamins/herbs specially formulated for those who have our have had EBV. I bought a 1-month supply& I'm hoping it helps. I have always had the thought that EBV & fibro are somehow connected & I've never tried anything specifically to help EBV so maybe the vitamins are just what I need?! FINGERS CROSSED!!
I'm going for the CXR this week. One step at a time!
If anyone's tried plaquinal id be interested in knowing if it helps at all. My hands get so so stiff and sore. Just holding my kindle while I type this makes my hand stiff and when I put it down my hand will be sore for a couple of minutes. So tired of feeling pain everyday!
Gentle hugs to you all and thanks again for your replies I appreciate them all!!
By the way, my ANA was also normal so right now I'm thinking maybe the problem with my hands is osteoarthritis. The one thing that scares me is that I've been walking around with an elevated sed rate for 14 years! I don't know if this can harm me.