I went to the Rheumatologist on Tuesday. I had been referred there because I had complained to my Internist about joint and muscle pain. When the internist did a RF test it was 97. Anyway, I explained all this to the Rheumy and she said that I don't have Lupus because I had a negative ANA. She also said I don't think you have RA either. I explained that this has never been debilitating pain and Aleve seems to help, but I do have much fatigue and good days as well as bad. Also I have many days with flu like symptoms- but no fever. She said that since I had no swelling that she could see, she had no clinical basis for RA. She did not do any xrays.
While I am very excited that she said I don't have either RA or Lupus. I am frustrated that I cant put a name to what is going on. This has been the year from **** and I am ready for answers. She did do an anti ccp test, normal bloodwork and a thyroid test but did not test RF again. I'll have to wait until next week for the results.
Any feedback from anyone would be appreciated.
Stacy
Some RD's are reluctant to call it "RA" if the signs and symptoms arent there. With your RF level high, though that seems a bit odd in my opinion. But, I'm sero negative.
Thanks for the quick reply Terinski. No, she did not test for fibro. She really only looked at my hands. She held my knee and moved the joint, but my jeans were on so she didn't look at them and did the same with elbows and shoulders.
I have had such a time with health this last year and was fine until then. I was diagnosed with low platelets last summer... a count of 9000 (150,000 and up is normal). Then a herniated disk in Dec. caused me to have surgery. After that the joint pain started.
This woman was supposed to be "the best" and I waited 3 months for the appointment. I'm just concerned that she wasn't as thorough as she needed to be.
Stacy
I too waited for a while for my first appt, as my RD is the only one in the medical group.
Stacy, I agree with Terinski. I don't think you had a thorough enough exam. She cannot tell you at this point that you don't have RA. She can tell you that the blood work and initial exam are not showing that. But my hands have never swelled to the point where they look arthritic. My blood work just came back negative after 6 years of having the disease.
You cannot tell from looking at me that I have RA. And, I have damage on my films that could be interpreted as OA or RA. My Rheumy tends to call it OA, my ortho tends to call it OA caused by RA.
Also, you can test negative for Lupus and still have it. And it is a cinch to check for FM. They only have to touch you in the trigger points to make the diagnosis and listen to your symptoms.
When I went to my first exam, they did a huge medical history on me and the exam was for over 2 hours, just like Terinski's.
I am concerned that you are not getting treated here. I wouldn't stop with this opinion. Maybe you should leave a message for the Internist that you saw and state that nothing was accomplished and you are not happy with the results.
I don't think this Rheumy gave you a fair evaluation. And is there no treatment plan at all? You are having symptoms that bear further investigation.
Thanks Deanna,
I think I will wait to see what the blood works shows. From what I've read (maybe you can tell me otherwise) the anti ccp test a very accurate indicator of disease. I agree with you about the appointment though. I really felt like there would be more involved than just a short chat. Especially with the way my blood tests have been over the past year.
My heart is glad that she said she could see nothing so far, but my body tells me otherwise. She did say she understood that I was in pain, but at this point she could see no "clinical" symptoms.
Thanks for the information!
Stacy
Stacy, I don't know if it's a totally accurate indicator. Mine came back on the high normal side.
The test is more definitive, but not entirely accurate. That is the one that showed up negative on me last go around. I do have RA.
I certainly don't want you to have any of these autoimmune diseases. But it troubles me when a doctor's investigations stop there when you are sure something is going on.
Do you have a follow up appointment or plan with her? Or, was it one of those, it's nice to chat with you, but I don't see anything wrong with you chats?
She said she'd like to see me in 6 months. Now that I'm in the "system" she can see me on a days notice and I won't have to wait and to call if there were any new developments.
I'm not real sure what to do at this point. Right now I think I'll concentrate on getting my kids ready for school and keep taking my aleve (as she suggested).
Thanks so much for the support. I read many posts here and you all are a great encouragement to many people.
Stacy
I think you need another evaluation, maybe by a different rheumatologist. I went through the same problem of having symptoms for many years with no diagnosis because the blood work was always normal. It took 8 years before my rheumatoid factor was positive at which point the rheumatologist took a different view. When it was determined I had RA, I think the rheumatoid factor was 60. It's a combination of things, not just the lab tests that determine if you have it. Many on this board have normal blood work but have been diagnosed with RA based on other findings. I think six months is too long to wait. Personal opinion. Especially since you do have a positive RF. Six months is too long, you could develop permanent damage in that time. The doctor is not being fair to you. You need a better, more complete opinion. Stacy,welcome,I agree ,it sounds like you do need a second opinion,some doctors that are in a specfic field get familar with those certain symptoms and thats all they look,(now not all are like that there are some good ones out there),and if you don't have them then you don't have it,also 6 months is way to long even though your "in the system" your not ( to them at least) a priority,My rheumy spent 4 hours with me my first visit ( 10 min in waiting room,5 min waiting in exam room) he did exrays, mri, bloodwork,and physical and visural exam,and asked me a million questions,also ask him or her questions that you are wondering about remember knowledge is power,and you have all the power in the world,we are here for you and will help you in anyway possible,
Thanks ladies! I know you are right. I think I will consider a second opinion. Just not sure when.
Stacy
Stacy, don't put it off for to long. Damage begins to occur from the beginning of RA. Without treatment to slow the progression or halt it, the damage can become to great. Find the time, for yourself so that if treatment is needed, they can start you on it. It's been shown that the more aggresive this disease is treated in the beginning, the less damage will occur and the likeyhood of remission is greater!! Mom, that sounds a little odd I too believe. I went for a lyme disease test and he ran all other bloodwork too at that time, called me up days later and said 'It looks like RA - you need to get to a rheumatologist asap" I went to the Rheumy and he spent so much time with me examining each joint, even my toes, asking me to make fists etc. He asked me about when I have pain (i.e., mornings and how long it lasts). He then ordered 6 more tubes of blood and about 25 xrays. This was my 1st appt w/him! I went back two weeks later, we went over the xrays and blooddwork and lo and behold, it was RA. No permanent damage yet and I was put on meds from that point on. If I were you, I'd go back again. Don't give up.
Thanks Terinski! So far today is a good day. That's what is so hard with this. You have a day where you feel like you've been hit by a mack truck and then you have a day where you feel down right good. Honestly, I have not had terrible pain. From what some of you experience daily, my suffering is minor.
I hear ya' though. I'll make an appointment for a second opinion as soon as my blood work returns.
Stacy
Good!! I am like you, the pain is not debilitating, more annoying and constant. There are days I feel real good, others like you said, I feel like I've been ran over by the garbage truck. Others aren't as fortunate!!! But, what got me to push and push and push with the GP to see the RD, was I just didn't feel right anymore!! We know our bodies, and if we aren't our own advocates, no one else will be.