I'm back...with questions! | Arthritis Information

 

Some may remember me on here but last year in December I got some sort of intestinal illness and then ended up up w/ severe joint pain almost 24 hours into the illness.  The pain got worse and worse and I'd seen two Rheumys did blood work and it showed NOTHING except a lack of vitamin d.  Both said before the blood work- "oh you may be on the road to RA."  But when the blood work came back they said "lose 50 pounds, blood work is fine, it's nothing, go home."  Well I finally saw the THIRD Rheumy who's at Emory and he reviewed my records and then told me point blank that what I'm describing doesn't really make sense because I have no swelling and past blood work was normal.  He said he'd do another sed rate and some sort of genetic marker for arthritis and some other blood work but that he didn't think it'd show anything and that I may just have to live w/ this "benign joint pain".  I went home feeling defeated yet again.  Well last night I got a call from him ( a week later) and he asked if we could chat for a few.  He said my sed rate is rather high and that he still doesn't know what we're dealing with but that SOMETHING is definately going on.  Some of the other tests are not back yet but he says he'll need to keep an eye on me from here on.  So what does a high sed rate mean besides you've got inflamation?  Is it serious?  Can you have a high sed rate and a negative RA test (I don't think that test came back yet but in the past it was normal) and have RA?  My sed rates were normal before so I'm confused yet HAPPY that FINALLY FINALLY FINALLY the paper proves what I've been trying to say and now he will take me seriously!!  Thanks for your help! Hi Monet!  I remember you.  Well, I guess not all your details, but I remember your name.  Anyway, you can have negative Rheumatoid Factor (RF) and still have RA.  It's called sero-negative.  I'm sero-negative as are quite a few others on the board.  It's fairly common.  In fact, you can even test positive for RF and not have RA.  Anyway, welcome back, and I'm glad your on your way to getting some answers.  I'll be interested to hear how it all turns out, so don't forget to post.

Yep, sed rate will show if there's inflammation. I don't believe it's the only test for that, but I think it's most common. I'm sorry you've had to wait so long and go through so many docs to finally get the ball rolling, but I'm glad someone is finally seeing! Well my vit d levels were checked months ago and they were pretty low.  So I take vitamin d and at first it did help take the edge off but after awhile the pain was still there.  But it's still good to take it.  Now I have to wonder too if once I take this NSAID (Clinoril) if that will lower my sed rate next time and they'll think all is healed?  Grrr how frustrating... I'm so glad to hear that something was elevated so they started to listen to your real complaints!  I guess SED is usually always (?) elevated in RA but I was having problems before joint issues (with fatigue) and they would be so sympathetic and notice so many things during the physical exam, see perfect bloodwork and dismiss me.  Argh!  Stay positive but do monitor what you feel and what is going on, you have to be a lot more proactive without the positive bloodwork.  Monet07 great job sticking with trying to get answers. So many of us here have heard similar words from a number of different doctors before finally getting affirmation that we are indeed sick. While "you have RA" is the last thing you want to hear, it is such a relief to have a diagnosis and know that you are not crazy and that your pain has a reason and name. The test for the RA marker should be anti-ccp antibody. It is specific to RA. Make sure to ask your doctor if tested for it. I am sero-negative, but had a positive anti-ccp. I should say that not all doctors/rheumatologists will run the test. Some do not even know about it, it is fairly new I think in the last five years and is not standard for initial tests.   Please let us know what your doctor says and try not to worry. You are finally on the path to a correct diagnosis. Bless your doctor.


Thanks for all your support! :)  This rheumy was about to dismiss me but now he seems to be on board and when I called him on the dismissing part last night when we talked he said "I'm a doctor.  I'm suppose to have answers.  Right now I don't have one yet and that's frustrating."  So I can see sometimes maybe their dismissive attitude could be due to their own frustration of not having the answer?  Anyways he said he doesn't want to put me on the big drugs right now because he doesn't know yet what I've got-make sense?  I guess if he put me on something stronger and maybe the side affects could harm whatever I've got going on that we don't even know about then that could be bad.   Be careful with the Vitamin D. Most people with disease have low levels of Vitamin D and people leap to the assumption the low Vitamin D causes the disease. This may be true. But there's another school of medicine who think the disease might feed on Vitamin D, so getting more might actually feed the disease.

Vitamin D is really 3 different things. One is a powerful natural steroid which suppresses symptoms of disease.

Another, Vitamin D125, I think it's called, is a vitamin your body uses to express 900 different genes and 20,000 more are suspected to be expressed by it. It's well known that there's some kind of genetic component to RA and other autoimmune disease, and people "get" the disease when the gene is triggered or "expressed"

So it's possible that Vitamin D could exacerbate the disease while at the same time masking the symptoms.

I do not know which theory is closer to the truth. Indeed, no one does and it is a source of raging debate in the scientific community. (Of course, Vitamin D Lobby supports the first theory, so you read a lot of studies that seem to support the theory). Yes, it's frustrating and confusing.

My personal approach is until I know one way or another I will neither avoid nor supplement Vitamin D.

Good luck in figuring out what is going on.

Monet, Monet - its good to see you again, and its great you finally had the right rheumy pull the right test at the right time your body was willing to share its secrets.  This "wait and see" attitude would worry me too because the medical party line is to hit it hard and fast now, but I like that he wants to figure out what it is before medicating.  Did he offer any pain control in the interim?  If not, I would see your family physician and start there because the pain part is the most disabling, at least for me.  I cannot even think, let alone try to be one step ahead of the doctors (I love it that he admitted to not knowing what was going on, I would hang on to this one) while being in pain.

Cathy... good words... Lynn49.. good resource..

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