Blown off by rheumatologist? | Arthritis Information

 

Hmm, I'm not sure what to think. I went to the RD last week and am wondering what to do now. 

I've been convinced for the past two months that I have RA--and I honestly think I still do. I have morning stiffness (although less than the "required" hour)/stiffness after sitting, pain in my back, and symmetrical pain in my knees, and finger joints /feet. I have also developed bursitis (according to the rheum) in my one hip.

My blood tests so far, however, have been normal.

The doctor moved my shoulders, legs, and had me make a fist, then said he doubted I had an inflammatory diseases because the necessary swelling wasn't there. He said it's probably fibromyalgia; he said it CAN be in the finger joints and can show up as symmetrical pain like RA. I've never heard this. I was also surprised that he really didn't feel any of my small joints--just the big ones.

I know many of you have fibro... is it my imagination, or did it seem that I sort of got lumped into the "I don't know, let's just go with this" diagnosis? I thought fibro was more related to muscle pain than small-joint pain in the fingers and feet.

I understand that doctors don't want to make a hasty decision, especially since it's so difficult to get rid of a diagnosis with your insurance if it turns out to be incorrect. I do appreciate this, and I do not mean to suggest disrespect for the specialist. But I was the one who actually requested x-rays of my knees and some more blood tests (anti-CCP and the HLA-27 gene marker)... he said, sure, he'd do it "if I wanted." I am supposed to get those tests back this week.

If the anti-CCP test comes back low (or "negative" for RA), what would you all recommend that I do? Live with the fibro diagnosis? Is a low anti-CCP in conjunction with other normal blood tests a definite No for RA?

I don't want to become obsessed, and I certainly am not excited about the prospect of going on RA meds, but if there is damage going on, I want to jump right on it.

As always, thanks for your wisdom and suggestions! :)

Christina

Get a second opinion, if next visit he still insists you do not have it and that it is just Fibro.

I did not even know I had fibro... I was just lumping that pain in with my RA pain. Heck I lump all of my pain in with my RA pain, unless it is in a part of the body like bladder, ovaries, kidneys, ect that I do not lump in with RA pain. I cannot tell the difference in my pains really and I have had this crap for my whole life. I just know it hurts it hurts and I will try to "protect" whatever hurts the worse.

I hope you get some answers soon. Good Luck! Keep us posted.

Thanks so much for responding, joonie. I agree that a second opinion is one of those things that never can hurt.

Does anyone here have normal tests and a low anti-CCP, but still have active damage and--thus--the RA diagnosis?

 

I also agree to having a second opinion. I am sero-negative for ra, but I have it none the less among other things. My Rheumy is wonderful except that he doesn't  believe in fibro. He says that is just uncontrolled ra. Kinda weird, but I am getting great treatment.

I'm gonna throw my hat in with the rest and say go for a second opinion.  It can't hurt, and will give you some peace of mind.  Keep us posted.

I haven't seen you around in a while. Glad to see ya

Linda

Somebody recently posted in here a study that says it takes on average nine years to get diagnosed.  We suffer from a disease that like to party then disappear.  Good luck, it was six years for me. 

Hi Christina. I think it depends upon the results of the Anti-ccp test. My understanding is that this is the most definitive test for RA. If that also comes back negative, and you are still uneasy about his diagnosis, then, of course you should get a second opinion. It is important that you be comfortable with the diagnosis.

I think I would feel better about this doctor if he had been the one to suggest the anti-ccp test. Did he prescribe anything to help manage the pain?

I don't have the swelling that is common in RA either. But my rheumatologist said that all my blood test results leave no doubt in her mind that it is RA. I asked on my last visit, if it could possibly be a different autoimmune disease, but she is convinced that it is RA. She still calls me a "puzzlement", though

This is often a difficult disease to diagnose. So many of the symptoms for RA are also symptoms for other diseases. High numbers on the inflammation tests can also mean that there is inflammation in some other part of your body, from another source.

Please let us know when you get the results of the latest tests. Try not to worry.

Gentle hugs, Nini

I an not sure I can really answer your questions.  I was first told that I have "just fibro."  Than, they said I had seronegative ra, ran the slew of dmards, pred for over 1.5 years, enbrel a few months and humria for over a year.  Now, I am told that I don't have sero negative ra and back to just the fibro dx.  And, I stopped all the ra related eds and many others 2 weeks ago.

I have visible swelling in hands and feet, inflammation blood markers are slightly elevated and I have all the other signs, the symmetrical pain, fatigue, memory issues, blah, blah, blah.

I was always told that fibro doesn't cause swelling.  I don't have any idea anymore, I think if we don't fit the typical mold they classify us in the fibro dx and call it done.  Sorry if I sound negative but haven't had any good luck with any doctors lately!
Hi Christina,

Boy do your symptoms sound like mine, the way they presented at first, and how all my tests came back negative. I had symmetric pain in many joints, lower back pain, foot pain and neuropathy. It turns out I had osteoarthritis, but it took several years for the damage to show on x-rays. I knew I had something, because the pain kept increasing, but doctor after doctor said they didn't know what was going on, and I was diagnosed with fibromyalgia, which I really don't know if I have or not.

There is arthritis on both sides of my family, back 2 generations. My sister is beginning to experience some of what I have, but, I seem to be the poster child in our family - I got it the worst! Yay, me!

I finally have decent pain control after years of bouncing from one to the next. I don't know why doctors don't just go with the cheapest and easiest to start with, because what I finally found worked was generic time-release morphine.

I cannot take anti-inflammatories after my stomach rebelled, and RA meds won't help me. I do take Soma at bedtime, another old-time reliable muscle relaxant and sleep aid, and generic Norco (hydrocodone 7.5/acetaminiphen 325) for breakthru pain, which doesn't happen all that often I am glad to say. I was prescribed Neurontin when I was having alot of neuropathy, and I still take a low dose.

Hope you find an MD or rheum doc that can help you. Sometimes they just have to guess at first and try to help your symptoms. You might have to go with that for now. Good luck.
I agree with getting a second opinion. My blood tests were all fine and I did not present with swelling at first. What convinced my rheumatologist was the x-rays that showed changes in my hands. I hope you feel better soon. Love, JuliahSecond opinion, Christina definitely is in order. What a bummer after you waiting so long for that appointment too. I remember us talking about it.  Christina, this is a very frustrating disease to have when it comes to "do i
have it or don't i". There are other symptoms and swelling should not be the
main thing. I have hardly any swelling but I have stiffness, not a lot, but
enough to effect my activities of daily living in the mornings. I do have
headaches, frequent nausea, a constant flu like feeling. I just don't feel well
much of the time. This disease is so much more than swelling joints. It
takes a toll on a person over time. I have asked if I have fibro and have been
told NO. So what gives. Your doctor is not looking at the whole pic. I agree
with cordelia. Go find another doctor.

You all are so sweet; I can't believe you remembered that I was waiting for an appointment (and welcome to the forum, Betty

I am waiting on that anti-CCP, which should be coming back in the next day or two. If it's high and indicates RA, then I assume this doctor will treat me, and I'll be okay with him. But if it's negative, I think I'm going to go ahead and schedule an appointment with someone else. Someone's got to do something, though, as I know the bursitis is probably a result of my hobbling up the stairs.

Linda, by the way, I think I owe you a belated happy birthday, as I remember that it was the day of my rheumatologist appointment!

Again, thanks to all.  You're such a kind bunch.

drmalcolm39335.6781365741

I am so sorry Christina.  I cannot offer anything more than the others.  I know I should consider myself lucky that I was diagnosed so quickly but unfortunately I am sero-positive and my anti-CCP was off the charts.  I agree with the second opinion though.  I can completely identify with the hobbling ... it really begins to bother all the other joints.   Take care and I hope you are feeling better soon.

Connie

Hi Christina. What is 'JUST Fibro'? I've heard it is very painful? Lynda

Thanks, Connie! The domino effect that hobbling can have is maddening.

Lynda, I've heard that fibromyalgia is very painful, too. I'm not sure about your question of "just fibro," though, (not sure if you were asking me or just the board in general).

The thing is, I've not heard of it being in the small joints of the hands and feet so much, though...especially in a symmetric fashion; rather, it supposedly presents more as muscle pain and at certain pressure points.

 

Christina,

I am often in the same boat as you.  I do have fibro as well as RA.  It started when I was 8 years old but never showed up in my blood work and I only had minor swelling & heat.  To this day, I am the same way but I definately have RA.  I was lucky to find a doctor at age 18 who gave me the diagnose and treats me for RA even though I don't present in the typical way.  I only occasionally test positive for rheumatoid factor. 

I will tell you that eventhough everyone though this disease wasn't damaging my joints (showed clear on MRI's, x-rays, and glided somewhat normal), when I had knee surgery the other year, the surgeon found extensive damage he wasn't expecting.  I was told that if I don't wear an unloading brace everyday, I will need a full knee replacement in 3 years.  However, I am only 35 so they don't want to replace it.

This is such a frustrating disease.  I am going through a spell where I can't control it and it has reached a breaking point.  Good luck and keep trying different doctors.  It took many years before I every got a correct diagnoise.

I have to agree.  The second opinion is a good idea.  If for nothing else but peace of mind.  I was dx'd years ago in such an offhand manner that I really didn't think that there was anything to it

Thanks for the support, everyone--I made an appointment with a new rheum doctor and got in on September 25th! And apparently he will be taking an entire hour with me at the new patient appointment instead of just the 20 minutes I had with this first doctor. My mind is more at ease now (although my mother left for a flight today of all days into Frankfurt Airport, so I still have plenty of frayed nerves).

 

I don't think I ever had an anti-ccp test done.

My bloodwork has been normal the last 10 years even when I'm flaring badly (CRP and sed rate), those tests used to be high when I was flaring. None of the other RA tests have ever been positive.

I have been DX with RA for over 30 years. I'm sure I had bouts of it as a child.

So you can have RA, tons of damage, and normal blood tests.

The anti ccp test is less than 5 years old so if there is no question about your diagnosis as a long term patient you are unlikely to have received it

 

Hi Christina,

Good luck at your appt on Sept 25th.  I am one of those seronegative RA people who had symmetrical joint pain in my distal joints...hands and feet.  Well, a very smart doctor recognized what this could mean and started me on Plaquenil way back in 1999.  Along with an NSAID (Relafen) I was doing just fine even though he couldn't tell me "exactly" what it was.  He said he'd rather treat the symptoms than worry about the label.  Over time...2 years later...I was diagnosed with RA and am doing really well now.  It took a few years to tweak the meds and all...I also have dry eyes, dry mouth....the low-grade fever, the fatigue...these were common until Remicade helped.  I think one of the factors that helped point to a diagnosis was the way that prednisone helped my symptoms so much.

 

good luck to you!  more later....

Christina,

Good luck with the new doc!

I am sure you are doing the right thing getting a second opinion.

My daughter is currently undiagnosed - she has bone pain and inflammation on MRI - but her xrays are always clear.  Rheumys check joints all the time - she is always flexible no stiffness even! frustrating.

Her bloods show that her inflammatory markers go up and down for no apparant reason.  she has had stacks of test and cultures done that prove nothing in particular.  Very frustrating so I do understand a little about what you are going through.

I hope it all gets better for you soon and hopefully this new doc will send you on the right path.

In 23 years my labs have never come back anything short of perfect. And believe me and all my docs, for the love of God I DO HAVE RA.
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